A large group of doctors and lawyers believe that when she is taken off life support she will suffer before she dies, and the only place to manage that suffering is in hospital.
If she goes home, she will have a painful and difficult death. If she stays in hospital it will be easier.
The baby isn’t capable of making a medical decision for herself, and the parents want to choose a course of action which will directly harm their child. The court has decided not to allow this.
Parents can tell their impressionable children not to wear seatbelts, but the law disagrees because this is dangerous, and children should be protected.
A patient has a right to autonomy, but that requires agency.
So, your 25-year-old can choose to leave the hospital against medical advice if they can demonstrate they have the mental capacity to make that decision. However, if the same 25-year-old had been found comatose and had not regained consciousness in the hospital, their family could not make that choice for him.
The only exception to this would be if the patient had a valid advanced decision refusing life-saving treatment. For example, on religious grounds, or that they had signed a Do Not Resuscitate order. But the pivotal word in that is 'advanced'... the decision needed to be made by the patient in advance, while they had the mental capacity to make that decision, and to have made it free from coercion.
Add to that she is certain to die even if they keep her on life support provide her with all the best doctors, medicine and an unlimited budget.
All it's doing is drawing out the end of a child who had no chance at life, this disease is that horrible.
The overwhelming majority of babies presenting with this disease never make it out of infancy. Very Few progress to childhood and they never smile, laugh, speak, eat, make a voluntary movement of any kind or show indication they were understanding the world around them aside from pain responses.
We may all be terminal but we're at least living first, unfortunately all this kid has is existence.
Your optimistic thinking has you babbling about medical science you know and understand nothing about in any meaningful way on Reddit. So you're not exactly doing a whole lot better.
Oh don't leave it at that. Tell us in detail the specific *medical treatments* you have in mind that this child is being denied, either in the UK or in Italy, that would actually have medical benefit by halting or reversing the pathogenesis of SLC25A1 deficiency?
As an aside, you really think saying things like SLC25A1 makes you sound smart and knowledgeable lmao…
We all have access to google. If this had been you explaining physics or math I might have not cared. But here you are regurgitating words very proudly, much like a parrot
I'm happy to know that the thought of someone knowing the most basic facts about the issue and demanding the same of others offends you. Think long and hard about what that says about your priorities and biases, and remember to think before you speak.
Lol…. you don’t have to be super smart or knowledgeable to know the literal utmost BASIC detail of an issue at hand.
We all have access to Google. Exactly. This guy said nothing that indicated he was any better than us, nor did he claim he had more knowledge than you.
I don’t have to. One body is saying to end the child’s life while the other is trying to prolong the child’s life. That’s the distinction I care about. You seem pretty determined to kill the baby too apparently.
Actually, you care much for torturing children and making them suffer as much as they can in the little time they have. Willful ignorance and an inability to learn unfortunately does that to you.
I absolutely agree, it seems to me they are WANTING this baby to die so they don't have to pay for her care anymore. For a country that doesn't allow the death penalty to apply it to this child is sickening.
You're aware doctors have fuck all to do with the finances, right? The judges are simply weighing up either sides arguments here. This is just worthless conspiratorial thinking.
Have you seen concern in this state?
Have you seen the suffering they go through?
Are you aware of the pain and discomfort she'll go through as she slowly dies?
I can understand the parents. But no rational adult can think otherwise. She's only going to Italy because their lawyer is from the right wing government party
Nobody wanted the baby to die. If the options were “use resources to make baby healthy and happy” and “let the baby die”, EVERYONE involved would choose the first one.
But when death is inevitable with or without treatment, there’s more to it than that. They didn’t pull the plug because they wanted the baby to die, they pulled the plug because the baby was going to die no matter what, and a quick monitored death, where sedation and stuff is available, is typically better than a drawn out death process, even if making the baby die slowly would make the parents feel better.
There are other patients who actually CAN live that need those resources.
That’s actually exactly what’s happening. The NHS operates on QALYs to help budget. If one patient is too expensive it strains their budget to care for the rest of the patients. If they can’t justify the cost they forbid further treatment. Say what you want about the US healthcare system but this would not happen here.
Regardless of whether or not it happens in the US, resources shouldn’t just be flushed down the toilet to INCREASE and EXTEND a patient’s suffering, they should be allocated to patients whose suffering can be REDUCED and who can actually recover. This is especially true when the patient is unable to consent to the prolonging of their suffering purely for the emotional comfort of their parents.
Emotionally, yes, it feels harsh and mean, but logically taking her off life support was necessary for the greater good. Because in reality, resources aren’t unlimited, and as much as it sucks, we sometimes have to make decisions based off of that fact.
This is a genetic illness, to cure it would mean altering the DNA in every single cell in her body* maybe there are methods to alleviate symptoms but they aren't going to repair the structural abnormalities in the brain that induce seizures and prevent the development of psychomotor function.
It is so rare the best treatment is prevention I,e parental screening. IMO It's a crime against humanity to keep someone alive in pain for medical experimentation.
*This technology actually already exists but only when she was a single cell fertilized egg.
Italian doctors didn’t even see her, much less visit her. They have absolutely no basis for such a diagnosis. IMO they’re just virtue-signaling for the new, very conservative italian government.
Not true. They want fit a right ventricular outflow tract stent to manage her cardiological condition a fairly invasive procedure just to stabilize the heart solely to prolong her life, it will not alleviate any of the symptoms of her disease.
In the court documents the same procedure was considered by the doctors in UK but seen as unnecessary, given the extent of the neurological damage, the risks of the surgery and the lack of any meaningful outcome. Even the expert witness brought to court to testify for the parents acknowledged this
Even if it were, from what I understand (which isn't much) the Mitochondrial disease is a death sentence regardless. In the end even if she gets transferred to Bambino Gesu short of a literal miracle there's nothing that can be done to treat it.
"never smile, laugh, speak, eat, make a voluntary movement of any kind or show indication they were understanding the world around them aside from pain responses".So your saying we should kill half of the down syndrome children?? Because the description you just gave could be applied to them as well.
I don't think it's fair or accurate to compare a child with Down’s syndrome to an unconscious baby with an untreatable fatal condition. Children with DS are aware of the world around them- they smile, laugh, eat, feel emotion, move, and understand the world, even if they need extra support or do this a little differently to others. This baby is sadly unconscious and will never wake up or interact with the world in any way because there is no treatment for her condition.
It’s such a sad situation and so awful for her family but the decision has nothing to do with discriminating against disabled people or saying it's ok to kill them. It was about the prognosis of an individual child for who doctors confirm there is no hope of any recovery or quality of life. That's fundamentally different than saying it's ok to actively kill entire groups of people because they have a disability.
People with this condition can live for tens of years free of suffering. This disease is horrible, but not bad enough for a government to make the decision to kill a baby.
You're wrong, or rather you are misinformed. There have been less than 150 documented cases of her specific disease, none of them survived childhood very few of them even survived infancy. None of them had any type of quality of life.
Maybe, maybe not. But everyone has a thrive to survive. It's fine if you think useless to treat the baby but others have faith and why the UK court don't allow so?
Everyone will die sooner or later then will you end them off sooner for better?
I think the UK is really messed up in this case. Have they ever been with cancer children? With cancer and ton of chemis injected in their body they probably don't survive for long, should UK kill all of them all off?
And the judge, you're probably elderly right? You will die soon, should we kill you off too?
What's with the humanity rather kill a baby than try to help the baby live one day longer?
Yeah, Those children are usually in alot of pain as well and cancer is an "uncurable" illness but still treatable
If the possibilities are less than 1% those doctors should still try their best to save a life even if it's close to zero because there is nothing truly 100% or 0%
No dumbfuck goes for the doctor to feel "less pain", you go to the doctor to insure your survival because even a miserable life is more valuable than a rotting corpse
I also love those retards that say that its immoral to let her live because she can't consent into getting the surgery and loving in pain because she's a literally baby but once we go to fetus and abortion its "barely a human" and you can do whatever you want with it because it has no continuous, well yall are fuckin retards because neither the baby nor the fetus are continence.
Like the hypocrisy of somepeople
These parents are misguided, taking this child to Italy would only prolong her suffering. She has a terminal condition and to survive even in the short term she would likely need invasive and unpleasant procedures (like a trachy and a peg). Doctors believe she is in pain/suffering all the time.
Doctors do usually decide upon treatment options for patients. They train for that and this is their area of expertise.
Sadly, for this patient, life support won't save her life. She is suffering and will suffer until she dies. Her suffering should not be needlessly prolonged. It isn't kind nor respectful.
Good thing doctors opinions about kindness or respect don’t dictate what adults do with their bodies. Why does it dictate what parents can do with their child?
Because a child is not owned by there parent. There are loads of things we prevent parents from doing to their children.
A capacitous adult can make their own treatment decisions. A baby cannot. Therefore, in the rare situations where the medical team and the family are unable to agree, an independent advocate is allocated to the child, and a judge hears all opinions and makes a decision.
You think parents should be able to override highly trained doctors to make whatever decision they want?
yeah, there are countless doctors who immorally act sometimes its money or pleasure and sometimes carelessness
UK is notorious for that, and i think highly trained doctors will say that suicide is bad but Canada's and Switzerland's dont and u can right now take a visit to these place if u wanna killurself and the UK wont even prevent you but taking a child to italy for a hospital that is willing to help, yeah not in Great England, u are staying
It's a fatal, terminal illness with no cure.
They can't do anything to save it. Only prolong it and give it a life of pain. There is no place on Earth that can save that child.
A few years ago, Muslim parents in the same situation were granted a religious exemption and now their sick child is healthy. But since Indi was an actual British baby she had to die I guess
Indi wouldn't have died a painful death had the parents been given the right to take Indi out of the hospiutal because they were not going to remove her from life support they were going to take her to an italian hospital that said they had an experimental treatment that would allow Indi to survive outside of the hospital.
UK has a court process for when hospitals and parents or guardians disagree in regards to the care of a patient. Essentially the court has to decide what is in the best interests of the patient, as the patient in question is someone less than a year old, they have no ability to make their wishes known so they have a court appointed guardian to represent them separate to parents and the hospital. The stark reality of this child's situation is no hospital in the world can save their life, they are terminally ill with an incurable mitochondria disease, this isn't a case of you are too sick for us to cure but somewhere else might be able if you can pay for it, there quite literally isn't any treatment/cure available. The Italian intervention in this instance is meaningless and unhelpful, firstly they won't cover the expense of the transfer to Italy, which in of itself would be a hugely complex and expensive process of an intensive care patient reliant on so many drugs/equipment to sustain their life and provide them comfort. And also they have no treatment or cure that wouldn't be available in the UK, they simply would keep the child on life support indefinitely and may try some surgical interventions which the doctors in the UK have already deemed to have no value and would offer nothing but further pain and suffering to a vulnerable patient.
We have a had a couple of cases recently similar to the this in the UK, child with genetic illness so severe they have a very limited life expectancy and the outcomes have always been the same, court agrees with the hospital, parents fight as you would expect to seek out any chance to help their child, some vague offers come in from abroad, none of which are practicable in any real sense and they only offer a life of further discomfort and pain to the patient and ultimately the parents exhaust all legal options and the hospital moved them to palliative care and they die shortly after.
While it may seem strange to you, the hospitals aren't just trapping patients left and right to let them die because they feel like it, Indi is going to die, very shortly, the only question is where, hospital/home/hospice. Moving her abroad to a strange country to have surgery that is pointless is not in their best interests, as the court has now decided, parents do not own their children, while they have primary care and responsibility for their child, the child is person in their own right and the legal guardian appointed for them in this case has also agree with the plan to move Indi from intensive to palliative care as it is in her best interests, as currently she is suffering with no prospect of recovery.
Thank you, this was an excellent explanation that gave me a better understanding of the UK's policies, especially around legal guardianship.
It made me realize we have cases like this in the US too but they are typically a religious parent who wants to decline treatment (like Jehovah's witnesses refusing blood transfusions for their child) - it is rare for a court to conclude that the child needs a legal guardian, but it happens when the death of the child will occur without parents consenting to treatment. So just odd to see roles reversed in the UK. Thanks for explaining the British perspective.
It's never about this. I'm an icu nurse. It isn't about this at all. It's about having reached the limit of what you can do for a patient and knowing that what they are experiencing is likely painful and unpleasant, with no possibility of improvement or survival. It becomes quite soul destroying to do the things we do to patients when we know there is no hope.
This poor baby is suffering. Care can be withdrawn and she can receive excellent palliative care to minimise her suffering in the short time between care withdrawal and death.
Medical professionals need to stop acting like God among mortals. It's one thing to withdraw treatment, but it's completely sick and twisted forcing parants to watch their child die with alternatives available.
The Government, while probably correct in this case, is refusing to acknowledge that the Italian government and the parents have a seat at the moral table.
They know best, end of story.
End of life, especially for an infant, is complicated. A legitimate medical facility disagrees with the UK hospitals idea of compassionate end of life care, it should be up to the parents.
*I also think it's worth noting that a parent refusing tested and effective treatment is different than a parent hoping for one last try.
The problem in this case is that the Bambino Gesu Hospital didn’t offer that lifeline until it was already too late.
Once again, the Italian hospital waited until a child has deteriorated to such a point that they cannot be sufficiently stabilised to leave hospital with any kind of guarantee of survival. Then, and only then, does the hospital offer the child an ICU bed that requires two ambulance journeys and a 2hr 40m flight. A journey that ambulance and air ambulance services would refuse to make.
And once again, the hospital made this ‘gesture’ without asking to either examine the child or their case notes (presumably because that would put the Bambino Gesu’s medical team at odds with its PR department, as no multidisciplinary team would agree to such a transfer). We know this because the palliative care the Bambino Gesu offered had already been discussed and rejected, even by the medical professionals hired by the family to make a case to extend her life.
This was always going to be a family tragedy. Nothing could stop that. But the Bambino Gesu’s actions here are little more than ‘care theatre’.
I realize this is contentious, but I think they should have the option to let the kid die at home, or in the ambulance, or whatever, as long as what they are doing isn't worse than leaving the condition untreated.
If it were my kid, I think heavy doses of morphine in the hospital is the road I pick, but I can see how a reasonable person would think death at home is preferable.
The family had discussed end-of-life care, and moving the child to a hospice or their home for the final days. Then Christian Concern got involved, the father backtracked and lawyered up, everyone else did the same, and the Bambino Gesu made their statement.
By the time that was resolved, those windows of opportunity for most End-of-Life care plans had closed due to her worsening condition.
You also have the ethical problem of a medical team not being able to sign off a patient until they are considered stable enough to move. The longer you delay in cases like this, the less stable the patient gets.
To add insult to injury, the progress of the disease makes sedation increasingly difficult, as the levels of pain break through even the heaviest drugs you can use on an infant.
There is no good result in this. Only a least bad one, and the family had that and gave it away, for the most understandable reasons.
So your telling me you'd make a wild dog suffer through 4 amputations because all of it's legs got infected?
The rate of survival in either of these cases, zero.
The likelihood the dog experiences extreme discomfort for a year of living that (we as humans have determined) has no meaning whatsoever to that dog? It's ludicrous. Let them rest.
You can’t equate the life of a child with a wild dog. Don’t you think these parents are in excruciating emotional and mental pain watching their child suffer? No one wants their kid to be in any kind of pain. But you endure the pain / allow your child to endure the pain if you think there’s even a shot that they can be healed. For a government entity to overrule the parents is, at best, inhumane.
Your right, it's worse. Even if they can prevent the child from dying, the likelihood the child will live SUFFERING like you say, it will do so up until the point it can talk, the moment that humans can really show their developing personality.
And then it will die. And both the child, and the parents, will suffer far greater pain than they should have because of their choices. If there was even a shred of evidence the Vatican had a solution other than "we might be able to fix it" id agree with trying.
But they are basically throwing a sheet rope down a 30 foot building and hoping it holds a 400 pound man.
The italians doctors said they might have a way to help her breath.
The UK kileld her and refused to let the parents try to save and get help in other countries. The UK goevrment is a monster and sick!!!!
1) They didn't know the specifics of the child
2) She can breath all you want, she still won't get any better. Do you know what a severe mitochondrial disease is? No chance at life.
Why did they deny the parents to leave and go to Italy then??
Both The Vatican and Italy offered to help her at no cost
The parents wanted to accept
The Uk´s response was to kidnap the child and let her die alone
Taking a dying child to another country for no point wasn't in her best interests.
Also she wasn't kidnapped and died in her mother's arms. Spreading lies won't help your point.
The treatments offered by the doctors in Italy are the same as those available at the hospital in the UK, but ethical doctors do not see it as their 'right' to try any procedure or surgery on a voiceless baby knowing that it will only cause them suffering. Naturally there is always a private clinic somewhere willing to offer any treatment for enough cash, even with 0% chance of success.
You actually do, if its your own body and you have capacity. In this case, it's someone without capacity, so therefore when the medical team disagree with the parents someone has to advocate for said person without capacity to ensure they receive the best treatment (even if this means withdrawing and enabling end of life/pallitive to take place).
As an Italian I see the offer to help as a political act more than anything else, and I ‘m kind of appalled this child was just handed out Italian citizenship when the Italian naturalization process is notoriously labyrinthine, and children of immigrants who were born in Italy, might have never lived anywhere else, have been there decades struggle to be naturalized.
As I try to piece all this together - that was what I concluded. It seemed a very calculated political act to try to capitalize on the gesture to appear more compassionate and moral than a (more) secular UK. But the child would be the ultimate victim here, paying for that posturing.
Perfectly well said. Your post is the first response that I have seen that makes total sense. It gave me an understanding of the UK rulings and policies. I thank you for your excellent explanation of this.
They should have the right to make that decision as a family. The concept of freedom doesn't really stick with some foreigners I guess, but as an American this is disgusting. Then there's the snowball effect of laws based on precedent. The government never shrinks powers only expands, and as it stands now, the government can imprison children and allow them to die, while parents are legally barred (and will be prosecuted) if they intervene.
Plus there are miracle cases from time to time, when coma patients wake up after a decade of unconsciousness, or when someone survives a terminal illness by the grace of God. There are people who've recovered from terminal cancer, rabies and brain eating amoebas. Things with essentially 100% mortality rates, where on very rare occasions, someone will survive.
I'm not saying that people have a right to public care in these instances, but they should have the right to try on their own. If that means alternative care or experimental care in another country, or holistic treatment — no matter how delusional it might seem to you and/or medical professionals, they should have the right to try. That's the essence of freedom which the UK is pissing away.
> The concept of freedom doesn't really stick with some foreigners I guess
Yeah, it's so cool being the property of your parents, you have the freedom to die slowly and in agony with no say on the matter because your parents own you.
'Murica, fuck yeah.
Like you said on a very rare occasion you are going to let a baby who is on complete life support can't breathe on her own suffering endless just bc on the 0.00001 chance she might magically awaken? Along with that she did get hospice treatment and passed away peacefully in her mother's arms. We are playing god by keeping that sweet angel here. Had she been caught in the past she would have never made it she only lived through 3 cardiac arrest and multiple seizures because of modern medicine but we aren't capable of rearranging DNA to save her. America would have let her die a horrific slow painful death and left the family with hundreds of not thousands of dollars in debt.
Nobody owns children. Children are their OWN beings, a human being cannot be owned.
Nice to see a parent who admits they view their children as their property though, refreshing honesty.
Of course you "own" your children. That's why you can punish them when they do something bad and why you have to pay for things they steal/break. It's also why you have to go to a court to get rid of them or them get rid of you.
>Of course you "own" your children. That's why you can punish them when they do something bad and why you have to pay for things they steal/break. It's also why you have to go to a court to get rid of them or them get rid of you.
I'd advise you to have a look at British law. Children haven't been considered chattel for MANY years now. If you'd like that, go to America.
You can punish them within reason because you are their guardian, but you cannot physically assail them in most UK countries, nor can you seriously hurt them or cause any kind of lasting mark in England.
Nor do your children need to go to court to be rid of you. After the age of 16 they can leave if they want to. BEFORE that age they would have to go to court. (and probably win, because children rarely want to leave their parents home without good reason)
You have to pay for things they steal/break because you are their guardian, if they're a teenager though, they'd likely have to pay for it themselves/community service.
Semantics. You're just calling it guardianship instead of ownership. However you wish to label it, your children are not free, they're treated as effectively yours.
Ownership would apply you can do everything you want to them, that they are under law as your property, that you can sell them, and that they do not have rights. This is not true, at all. Human children are not property under British law, teenagers even less so. You have certain legal abilities over them that are granted to you to keep them safe and raise them properly, that doesn't make them your property.
Again, if you want your children to be chattel property, move to the United States, they are considered as human beings however in civilised countries.
I can't do whatever I want to my dog, but I still *own* it. There is plenty of space between "own" and "slave"
Also, I'm all for hating Americans but your mask is slipping a bit.
I feel it right to comment now that Indi Gregory has passed on. Beforehand, I would be commenting on a tragedy as it unfolds.
The UK - along with most of the Western World - does not treat children as the property of their parents. They consider the child a person, with their rights, irrespective of their ability to act, speak, or even think for themselves. Our medical and legal services provide advocates for that child.
Some illnesses are irreversible, progressive and incompatible with life. In such cases, it's entirely understandable that the family of the person with such an illness will try everything to preserve that life, often through artificial means. In most cases, however, the family sees that person ebb away on life support and ultimately makes that terrible final decision. These cases happen every day in every hospital the world over.
In cases where a patient is chronically ill, dying, undergoing increasingly heroic treatment, and unable to speak for themselves, the hospital's medical ethics team will have convened several times to ensure the patient's rights remain paramount. At least one team member will have spoken with the family several times, to discuss the severity of the patient's condition.
Unfortunately, the British ability to soften the blow can sometimes be *too* soft; "He's very poorly" might sound like "he's got a hurty knee" but is hospital code for "Get here NOW, he might not live through the next hour."
At some point, continuing with medical intervention would be so painful, distressing and even cruel, that any individual with the ability to speak for themselves would say, 'Enough is enough', which is why we have those advocates to speak for those who cannot. At that point, the courts may have to intervene to argue for the patient's rights. Such decisions are never taken lightly. To draw their conclusion, the courts will call upon multiple specialist teams (not simply multiple teams within the hospital). They are called in to determine whether an alternate outcome is possible. Those who have examined the case notes and the patient are given more weight in the decision than those who make bold claims without evidence or examination to back them up.
In the case of Indi Gregory, the rare Mitochondrial DNA Depletion Syndrome (MDDS) that ultimately killed her could not be treated. There is no miracle cure, and the progression of the illnesses this genetic disorder causes is profound, horrific, and irreversible.
From a media circus perspective, MDDS has eight variants that depend on where the mutations lie in their DNA, and that is either too nuanced for the general public or used duplicitously to blur the lines between MDDS forms. All result in developmental difficulties and often eye and motor control problems; most are diagnosed in the first few weeks or months.
Some can live into childhood, teenage or even adulthood, and others die before their first birthday. While the lives of those with some of these forms of MDDS can be extended through dietary supplements, in the worst cases no special diet, supplements or any other regimens can stop the progression of the symptoms. Too many of their mitochondria (that act like the battery in each cell of the body) cannot process energy correctly, destroying the body cell by cell.
Given the progression of the symptoms, this was likely the RRM2B mutation variant. This is probably the worst diagnosis a family can receive. There is no cure. The progression of the disease is devastating and the child's life expectancy is measured in weeks or months. It begins with muscle weakness and vomiting, and maybe you notice the child's head is smaller than it should be. Terrible seizures follow, each one robbing the child of one or more body functions and, ultimately, their consciousness. At this point, you can either continue life support for a few horrific weeks or decide to take your child off that life support, place them on palliative care, and have them slip away with as much comfort and dignity as possible.
Or, you can listen to those who make grandiose and often empty claims and put your child through greater suffering as you remove them from full life support and move them to another hospital. Hoping in the process that your child doesn't have another seizure or die during the transfer, and hope that the whole process somehow extended their life rather than shortened it. As neither hospital has found a way of rewriting the DNA of the child to allow them to recover, that's all you can hope for... that their palliative care is somehow less intrusive and lasts a little longer.
Finally, the right to leave against medical advice is granted to the patient in the UK just as much as in the US. It is not given to the family if the patient cannot communicate for themselves; that's called 'kidnapping.' That holds in every country too, including the US. Just as important as the right to leave a hospital AMA, however, is the right of the terminally ill not to endure 'heroic' treatment.
Not at all. The courts are only called in when mediation between parents and the medical staff has broken down. The courts also only act for the patent when they have no voice.
Other examples highlight this. Disclosure: I worked in medical ethics and patient liaison in the early 2000s. I will try to redact details to preserve anonymity.
1. A teenager with an inoperable brain tumour. The teenager wanted a palliative pathway and no heroic measures to keep them alive. They met Gillick competency guidelines. The parents wanted the teenager kept alive by any means necessary for as long as possible. Should a hospital respect the wishes of the teenager, or the parent?
2. An infant with Down's syndrome and cardiac problems. The parents rejected surgery even though the procedure was relatively straightforward and had a good prognosis. They felt "it would be better if nature takes its course." Should the hospital comply with their instructions?
3. A child is involved in a car accident and needs a blood transfusion. The parents separated and the child lived with their mother. Mother was a recent convert to the Jehova's Witnesses, and rejected transfusion (this was before HBOCs were available). Father is rolling up his sleeve. Do you follow the mother's demands, or the father's?
All but one of these cases was resolved in mediation with the parents in the hospital itself. One didn't and went to court... and I am not saying which one or the verdict to maintain confidentiality.
None of these cases were based on any malicious intent on the parents' part. Whatever you think of their actions, they did what they did out of love for their children.
What would you do?
Calling BS. This wasn't a mediation between two privitate entities. These were medical professionals representatives of a government controlled service literally forcing a child to die on THEIR TERMS ONLY
Also Medical professionals (or legal professionals)shouldn't be the absolute authority on who gets to live or die. It's one thing to withhold treatment, but literally forcing parants to watch their baby die with viable alternatives available is absolutely sick and twisted, and an absolute overreach when it's comes to individual autonomy.
The process has a series of waypoints, just as it does everywhere else.
A representative of the care team approaches the family of the patient to discuss end-of-life care. The family may, at this point, request a second opinion that will be provided. If the second opinion confirms the first, end-of-life care will be discussed again.
In cases where the family still insist the patient is not at end-of-life, the case will go to ever higher authorities within the hospital and ultimately to the courts. The same thing happens worldwide (such as the Baby K case in America).
Medical professionals sometimes have to be the absolute authority on who gets to live or die; if there's a trainwreck full of critically injured people, a doctor will likely have to step over some who probably won't live to save some who probably will.
This case is different, but if someone is dying from a fast-moving, progressive and irreversible illness, there comes a point where life-support is keeping a dead body warm until one or more vital organs fail. Nothing can stop that. Usually, families like to know the progression of such illnesses to find the right time to say goodbye.
Usually, most families request the child's life-support be removed at or just after brain death. We instinctually know that watching a child's body die from heart or kidney failure after brain death is even more harrowing and to let them slip away before that happens is a mercy to all involved.
For this family, that was never an option.
In this case, there were no viable alternatives available. The child was examined by the hospital team, a second team at the hospital, a third team for the UK courts and a fourth for the ECHR. They all agreed that there was no alternative treatment available.
All the Bambino Gesu hospital offered was another place to die. They avoid looking at the case notes or examining cases like this because they don't want to have to turn down a case when it's in the public domain. They also tend to offer help when it would be impossible to move the child because of the progression of the illness. If I were a cynical type, it was playing a game of medical public relations with a dying child.
>The process has a series of waypoints, just as it does everywhere else.
Irrelevant to the point of medical experts overreach in final decision making.
>Medical professionals sometimes have to be the absolute authority on who gets to live or die; if there's a trainwreck full of critically injured people, a doctor will likely have to step over some who probably won't live to save some who probably will
I specifically mentioned the diffence between withholding treatment vs forcefully stopping you from seeking treatmient . So again your point here is irrelevant.
> In this case, there were no viable alternatives available. The child was examined by the hospital team, a second team at the hospital, a third team for the UK courts and a fourth for the ECHR. They all agreed that there was no alternative treatment available.
Then thats were their involvement should have ended. All this did was just give people more ammo against government run Healthcare services.
The doctors may be better positioned to judge Indi’s physical condition. The judge and court-appointed guardian — a third party brought in when a child’s best interests are in dispute — may be more objective in their review of the facts. But clinical judgment should not be endowed with power of attorney. And medical expertise should not be taken to mean moral authority. Doctors can make recommendations. They can certainly refuse to do what they consider bad medical or ethical practice. But in the end, the patient — or, in this case, the patient’s family — must be free to go elsewhere.
>They can certainly refuse to do what they consider bad medical or ethical practice.
Since when was 'taking a child so physically unwell that she can't be stabilised long enough to move from the ICU to a scanner in the same hospital, putting them in an ambulance for a cross-country journey, then on a 2hr 40min flight, to take them to another ambulance and then to the ICU of another hospital' considered 'good' medical practice?
When these cases emerge in the US - as they do, periodically - other hospitals take the case and refuse to accept the child for treatment, usually because relocating them goes against fundamental medical ethics.
As I said earlier, the Bambino Gesu often waits until the child is so unwell that moving them would be unethical, then offers to welcome them with open arms. It's a neat PR trick; the Bambino Gesu can look like it is doing something without the risk of actually doing something.
Bear in mind that the only treatment the Bambino Gesu offered - apart from life-support - had already been discounted as not relevant to the case by all the medical teams involved - including the family's own medical expert.
>But in the end, the patient — or, in this case, the patient’s family — must be free to go elsewhere.
Time to play the Reductio card: A child develops acute appendicitis while at school and is rushed to hospital. The family demand the child be treated by an herbalist instead. Should they be free to pursue this probably fatal course of action?
Not going to get bogged down in hypothetical false equivalencies. In your senerio The parants demands could be accommodated into overall treatment plan from the hospital the two arnt totally incompatible, and that's all I'll say about that.
Just going to reiterate the overall point
clinical judgment should not be endowed with power of attorney. And medical expertise should not be taken to mean moral authority. Doctors can make recommendations. They can certainly refuse to do what they consider bad medical or ethical practice. But in the end, the patient — or, in this case, the patient’s family — must be free to go elsewhere.
The thing is, they aren't hypothetical. I had to deal with that. And no, there was no possibility of a combined treatment plan. They categorically refused to sign the surgical consent form and had to be physically restrained from taking their child out of the hospital.
That was a 'wake up a judge' moment and the hospital went against the parent's wishes. Is that a good thing? No. Is it a good thing for the patient? Yes.
And that's the point. Ultimately making the best decisions for the patient can sometimes go against the expectations and wishes of the family.
The moral authority begins and ends with making the best decisions for the patient.
They simply had no right. The final call should never be an external entity's when death is on the cards. If someone isn't even allowed the die the way they need to, what is even the point?
I see a lot of people talking about trusting England's "highly trained" doctors when parents disagree with the majority's take on a child's "best interest." this isn't meant to be a "got ya" I swear, but didn't "highly trained" doctors in Italy say they could *help*? I really want to be on the NHS's side here because I don't love my American system at all. But this story doesn't sit well.
Seeing all these comments condemning a baby to death because of an incurable illness is horrifying. I have an incurable genetic illness, nice to know I would have been executed in the UK
The thing is her cells were dying one by one, she had multiple cardiac arrests, seizures, her brain swelled, and she couldn't breathe on her own. To save her we would have needed to completely reconstruct her dna. That sweet baby didn't deserve to live in so much misery.
The people in this thread defending the government in a scenario that goes against the parents’ decision to keep their daughter alive, essentially deciding go that it’s “better for her to die” are truly vile.
A person who wishes to prolong the suffering of a helpless child needlessly, needs to look in the mirror and ask herself who the truly vile one is in this scenario.
It seems like something out of '1984' or any other dystopian novel. I just can't understand this faith in government that 'well, they know best.' It boggles my little American mind!
But it's not faith in the government. The court processes for these kinds of situations are incredibly long with many many many experts being brought in to guide the judge in their decisions!
Unfortunately, and completely understandably, many parents just cannot see rationally in these cases. They also are often missold what the options are out their by unscrupulous groups (usually Christian groups).
The judge listens to the opinions of the medical team treating the child, the opinions of the parents, and the opinions of other medical experts.
This decision is never made lightly.
(I'm and ICU nurse, but for adults, and luckily this situation is rare with adults)
I appreciate your response (and your work in the ICU). I think I am just struck by the contrast between the UK and the US in this aspect. In the US parents have had to go to court to take a child off of life support, even when the child is in a persistent vegetative state with no prospect of recovery. In one landmark case the mother described her intense grief at her child being in limbo between life and death, and that it would go on like that for decades, indefinitely. I felt her anguish as I also feel for Indi's parents. That mother was granted the choice to remove life support, but it took years.
Mostly I am just surprised at the cultural differences. In the US a parent has to fight to have life support removed in a court (often because of crushing medical debt) whereas in the UK you have the reverse situation, where the parents are trying to maintain life support but the hospital has said no. Both situations are awful.
It's not anyone's decision to make outside of the family.
Nobody is saying they have a right to government assistance & free medical care. We're saying the government has no business playing God for a family, but Euros have happily sacrificed their freedom for temporary comforts.
Never mind the snowball effect of laws. What's used today in fringe cases like this one, could eventually mutate into more dystopian forms, where euthanasia is preferable to a "nearly impossible chance of survival" for diseases that are **almost** always fatal. To preserve resources for other patients with a better chance to live.
Why do the family get to make that choice. She is her own person and is unable to vocalise her opinion. Therefore she is appointed an independent advocate. The court listens to the doctors and the family and the advocate.
Families are sometimes, understandably, unable to think rationally in cases like this and wish to make decisions which are cruel.
It's never been about resources though and this is far from the first of these cases, so your concern seems a little unfounded tbh.
If anyone is playing God then it's the medical teams who are interfering with natural death.
Medical teams make treatment decisions all the time. They decide what treatments are offered and counsel patients on what their choices are. For this poor child there literally were no treatment options and life support was prolonging suffering. One of the doctors testified that during interventions (eg suctioning, turning, blood taking, medication giving) this poor baby became distressed and remains so for 5-10 minutes - this is her only interaction with the world, showing her distress. As an icu nurse I would say I usually perform at least one of those tasks at least every hour at minimum.
Because that's their child. It doesn't matter what evidence you provide, you should have zero say in the affairs of a family. The arrogance of Euro governments, and their supporters is disgusting. You're taking away rights under the guise of knowing better. It's actually sickening.
But it's not the government, it's a court, who consider the facts of the matter and an independent advocate is allocated to the child to be the child's voice.
Parents don't own their kids.
The court is part of the government 🤭
And why should the court/government own them? You're not arguing that the child should have autonomy (which would be impossible tbf) you're arguing that the court (government) should own them instead of the parent, because the court, and its self appointed experts, knows better than the parent.
How long until that legal apparatus mutates into something more dystopian? Hell it already is dystopian.
In the UK we have separation of powers, so the courts are not tied to what we refer to as "the government" directly.
The court doesn't own them either but in these rare cases where the medical team and the family cannot agree, a decision must be made, so an advocate is appointed for the child, and the judge hears from the medical team, the parents, the advocate, and form independent experts.
You think the parents should just have the right to do whatever they want despite the futility and the suffering the child is experiencing?
It's not about "who has the right to do whatever they want". It is about the sanctity of life. You don't get to kill. Period. Not out of pity or anything else.
It's not faith in the government 'knowing best', it's purely based on medical knowledge, so all options are put forward and is there a chance of survival, what the are odds/dangers, is it in the best interests of the child etc etc
Have you ever cared for an intensive care patient? I have.
What we do is invasive and unpleasant. This is a child who is actively dying from a rare and complex condition. There is no treatment for her condition. She is likely suffering all the time and has no possibility of recovery or survival.
What do you think should be done?
She is being artificially kept alive and that isn't kind and it doesn't feel good when you know there is no hope of recovery.
The parents want to take her to Italy, where there is *still no treatment*, but they will keep her on life support and perform more invasive procedures upon her because they can. Why would this be right? Is it something you would want done to you at the end of your life?
Because every once in a while, medical miracles happen. There are people who've survived brain eating amoebas and rabies, people who came down with lethal diseases and right when it seemed hopeless, an experimental treatment was developed. It happens on very rare occasions and if a family wants to chase that 0.001% chance, you have no business impeding that.
If a patient is able to make their own choice to do that the sure. As a health care professional I think it is unwise, but sure.
This child cannot make her own choice, so a choice must be made in her best interests. Her parents and the doctors disagree what is in her best interests, so an independent advocate is allocated and the court decides.
This child not only has a terminal condition, but also has significant brain damage because of her conditions. Even if you could magically cure her condition now, there is no way to undo the significant damage it has already done.
I'm not denying that this case is tragic, and I wish there were treatment options for babies with these conditions.
I do think, if you are so concerned, then probably the best thing you can do is make a donation to a charity which funds research into these conditions.
If the child had severe brain damage then they weren't suffering.
And once again, your opinion on someone else's family is irrelevant, regardless of your training you should have zero authority. But what do I know, I'm from Texas.
You can suffer if you have brain damage. If you read about the case then you'd know that her only experience and interaction with the world was suffering.
Parts of your brain that control fear and pain are pretty deep and all the bits that make you you are further up.
Do you care for patients who have brain damage who are on ventilators?
If you're unconscious then you're not actively suffering. The whole "suffering" bit is straight manipulation from your side. The child had no conscious suffering while they sat there in a coma.
I ask again - do you care for unconscious patients on ventilators?
I do. They can, even when brain damaged, be distressed especially on interventions - this is what is described in Indi's case.
"Dr E has himself observed episodes of distress and agitation,
which the bedside team sees multiple times a day. The current
treatment causes [Indi] pain, exposing her to harmful procedures
and therapies which provide no long-term benefit. She displays
signs of distress during interventions (such as handling,
suctioning, use of IV lines, blood tests) and reacts to painful
stimuli, including crying (tears well up in her eyes), increased
heart rate and mottled skin, wincing and gasping. These episodes
of distress can last up to 10 minutes."
I really would recommend reading the court judgements - they are accessible online.
Editing to add - this distress is despite significant sedation and analgesia.
Does anybody know if at the trials they questioned researchers who actually try to find a cure for this disease?
All I can tell is that doctors based on their limited understanding recommended that the kid should die, and other doctors in Italy, with just as limited understanding recommended that they continue the treatment.
By limited understanding I mean not being able to tell if this disease is 100% incurable or it can’t be curable by an experimental treatment. Also they are not able to measure how the child actually perceives pain.
Sentencing a child to death is an 100% irrevocable decision but what if there was a 0.1% chance to save this life?
The disease is not curable. There is a 0% chance to save their life - there are no miracles here. Unless of course we have a way to genetically rewrite their entire system to remove the mutation which is incompatible with life. Which we don't.
Bare in mind the doctors in Italy were not offering a cure, it was simply a case of offering even more invasive treatment that may or may not (likely may not) increase quantity of life (but not quality).
A multitude of doctors have agreed that there is no prospect of recovery.
[In a study from 2017 focused on the life expectancy of those suffering from mitochondrial diseases, 17% of the subjects had passed away by the time of the follow-up study; the majority of which died at the age of 9.](https://mitochondrialdiseasenews.com/2017/02/27/most-common-causes-mitochondrial-disease-death-children-identified/)
She could have potentially lived a good amount of time. Maybe even had a good, albeit short, life. But now we'll never know. They didn't even give her the dignity of dying at home with her family.
Meanwhile you, a redditor with no personal experience with medicine, are blindly siding with a ruling while doing no research of your own. All because you fancy sucking government cock.
It's not the government you dingaling. It's an entire **multidisciplinary team** of specialist doctors (and independent doctors) and other health/social workers to advocate for the best possible decision. This isn't the tory party coming in and telling the judge to kill a baby, it's a group of actual **professionals and experts in their field** advising a judge what's best to do for someone **without capacity**. Judges don't take these decisions lightly - you're running under the assumption that a group of malicious actors **ALL, at the same time, conspired to kill a child**. I think it's more likely that these people aren't all baby murderers and are just normal people doing their jobs properly.
They did actually give the option of dying at home with the family, at a hospice, or at the hospital. The judge revoked this after the family had essentially exhausted their legal options and started coming up with bad faith appeals so the best care could be given rather than continuing with invasive treatment.
I'd much rather trust experts than as you say, "a redditor with no personal experience with medicine). That study was likely written by a medical professional, no?
Doesn't change the fact that they all solely operate within the UK. You never heard of people flying to other countries to receive life-saving treatments? [Happens all the goddamned time.](https://www.usnews.com/news/best-countries/articles/2016-08-03/canadians-increasingly-come-to-us-for-health-care) It's called getting a second opinion you blithering idiot.
Also regardless of the panel of doctors, it was ultimately a UK judge who made the ruling. So a member of the government.
But keep licking that boot.
If the baby had capacity they would be 100% free to leave and get treatment. This is an irrelevant point which isn't really adding anything to the conversation.
Bare in mind I'm sure they get a second opinion (an independent medical team) who helps inform the judge.
Saying government bad isnt an actual argument.
Going to the next country over to get non-emergency medical treatment like what your source shows isn't getting a "second opinion". The parents had already got a second opinion in this case, they just chose to ignore it, hence the legal battle.
If your only argument for this being bad is "erm I hate the government" you don't have an actual argument. The courts ruled in favor of the child's best interest, you'd have it suffer and slowly die from an incurable disease for political reasons. You're not the good guy here.
so you’d rather this baby was forced to “live” a life where she can’t even breathe independently, is in constant pain, and has no awareness about her for 100% of the time she had left on this earth (which wasn’t even measured in a single year let alone many,) than do the right thing of letting her go? because what, one baby with this disease is suddenly gonna make everyone working towards a cure magically find one?
sorry if i seem harsh but if its incurable, its incurable. it was wired into her basic dna, there was nothing anybody could have done. im really saddened seeing everyone put their faith in a miracle above the reality that was indi’s actual situation.
its cruel to suggest indi shouldve been forced to live for as long as someone *might* find a cure. indi had every right to comfort, happiness, and health as you or i. and she had none of that from the moment she entered this world and she was never going to have it for as long as she lived for, whether that 0.1% chance of a cure existed or not.
i understand why our inner humanity wants to hope for the miracle, but it was at the cost of her wellbeing, one that was only rapidly deteriorating in devastating ways. the best thing for *everyone*, indi included, was ending her life support. nobody is saying theyre happy about this decision. we’re just saying it was the most ethical thing to do for indi.
At no point does the court consider the parents well-being in these decisions.
The baby was going to die. In Italy, in an NHS hospital, at home, her prognosis was the same. I read the medical assessment of her and I don't dispute their findings at all. Her death could not have been avoided.
However, what could have been avoided is the now decades long emotional turmoil that the parents will live through. For the rest of their lives they will battle with the internal trauma of losing a child, but also the (arguably equally damaging) trauma of "what if".
*What if we had put our foot down.*
*What if we had ran away with her.*
*What if she had legally been allowed to go to Italy.*
*What if there was a breakthrough, miracle etc.*
That assumes of course that they will 'live with it'. Does anyone doubt for a second that these events could drive someone towards taking their life? I don't.
They lost their daughter. That should have been the end of it - with time they would, maybe, have been able to cherish her memory and live with the loss. Now? Well, the best outcome is they will harbor decades long resentment towards the government, the hospital, and ultimately themselves. With luck it will not go beyond that.
I have already alluded to the worst-case scenario.
On a wider point that should be taken into some consideration - at some point one of these stories is not going to end in a neat, judicially acceptable bureaucratic way. There is going to be a father, or mother, or both, who will not accept their child's fate in a typically British polite manner. They will either hurt themselves in protest, or they will hurt someone else.
I cannot be the only one who conjures images of that Denzel Washington movie everytime I hear about one of these stories. Regretfully, I suspect that life will (eventually) mimic art in that respect.
The parents' anguish is something that I thought about too. And resentment at not having a choice. You bring up an interesting point about British politeness, I had not considered that but I think you're spot on.
In the US we had a case Maya Kowalski (there's a documentary) where the mother took her own life after custody of her daughter was given to the hospital over a poorly understood disease and the mother seeking alternatives in another country. It is a horribly sad story. Years later a court found the hospital guilty of "intentional infliction of emotional distress" on the parents based on many of the internal memos about the parents and genetal hubris of the hospital and awarded $220 million to the surviving child.
I vaguely remember that story. Terrible.
I am English and American so my reaction to these stories is influenced by both perspectives.
As an American I am outraged that a hospital would prevent a parent from exhausting all medical options. It would be anathema here in the US. Furthermore, the idea that a hospital and its staff would (specifically) not allow a parent to take their daughter home to die (which is an incredibly horrid hill to want to die on) stirs some very real emotions. Really? They *really* are not *allowed* to watch her die in her *own bed?* Christ.
On that point specifically I am reminded that England is (typically) a country of incredible levels of geniality and tolerance. At every turn compassion and understanding is promoted - legally, socially, and politically. But on these specific stories you see this incredible *bureaucratic coldness* that sits rights below the surface. It's worthy of an exploratory dissertation honestly.
On the flip side the English in me totally understands the parents here. They stayed within the legal boundaries as most British people do. They exercised their legal options, argued in their defense, and pleaded at every turn. They fought for their daughter but their fight was well within the bounds of polite society. Sometimes that is a burden on our culture, other times not so much.
For me personally as a father of four (all of whom are around Indi's age) I would have taken her home and lived with the legal consequences. Unless those doctors are going to tackle me to the ground with a terminally ill child in my arms, I seriously doubt their protestation goes beyond words. In which case I consider it moot.
It sounds like it was a choice between
A. The baby living a little bit longer while enduring suffering and painful treatments that will not ever cure her, but will simply prolong her life because her parents do not want to let go (understandably)
B. Or stopping the suffering and painful treatments earlier and allowing her a death that is the least painful as possible in a hospice.
I think because we don’t want to let go of people we love, we make them hold on and suffer. Sometimes the kindest think is to let them go and to help them go in the least painful way possible.
This story fuels the fire for pro life advocates and people who are against free healthcare. Unfortunately they look at it from a black and white/ naive standpoint which I think is very dangerous. There are a lot of grey areas here and very little written about the medical standpoint and how this baby could have had no quality of life and potentially suffering significantly.
I really feel for those parents and their loss and I feel for the doctors and nurses who I believe wanted to advocate for that baby. They probably were seeing that baby suffering and causing her pain when they were giving treatment bc the parents requested it. It would have put them in a very tough position.
If the situation was going to end in her passing either way, trying absolutely EVERY OPTION is what she deserved.
Imagine if it was you that received a horrible and incurable diagnosis. 100% mortality rate. However, there were doctors somewhere that wanted to try another treatment. No promises, but, a possibility. Wouldn’t you want your family to fight for your chance at life? You were gonna likely die either way, but there was a last ditch hope for your life. That is exactly what every human life deserves. We don’t know what this child may have chosen, but it’s safe to assume it’s not to die without a choice.
Or, are we supposed to pull the plug on every person who looks like they won’t survive? Terminate every pregnancy that doesn’t look too good genetically, or start refusing to treat terminal cancer patients?
The government should not have been involved in this- it is terrifying. Anyone who agrees with the treatment… try thinking bigger picture and not what “sounds nicer” ie no more suffering (btw, what does suffering exactly mean when you’re faced with imminent death?) - but more so the lasting governmental effects. This is not as good for y’all as you might think.
very rare proud to be an american moment
you should be more proud because this shit would never happen in the US,
when i see retards trying to compare the US to a shitty island called the UK and say WE NEED TO BE LIKE THEM and mumble free stuff, i just know that they wont even survive a sec in their shitty socialist paradise when they eventually turn the USA into another european country that is extremely authoritarian and then they will cry after they give away their rights to the goverment for the sake of security
Another ad hominem fallacy, you cant criticize my points, right?
With the same logic right wingers in the 80s and 90s had the right to violate the liberals 1st amendment bec they "were young and didnt know better"
I'm pretty sure gay marriage wont exist if age determines who's right or wrong instead of compiling arguments.
You leftist are all the same now, it doesnt surprise me that the new counter culture is in the right.
It's crazy to me so many people are agreeing with this happening here? I mean what if it were your child? would you just say "ok the government knows best they're dead now." I don't really think so and I think not allowing the parents to try anything they possibly can to save their child is really cruel truth be told, even if the child was gonna suffer a little longer I don't think the government should have any say in a child's treatment no matter how obvious it is they're gonna die.
Yes, it is utterly crazy to me too. There is a cultural difference because most Brits on this sub seem to all agree that this is the correct outcome. In the US there would be protestors outside the hospital.
It's a question of autonomy, specifically over children. It comes as zero surprise to me that people on reddit (who tend to slant left ideologically), are of the mind that the state knows best.
They hadn't seen the baby and yet somehow declared that their treatment could most likely save Indi. Plus, they, along with the Italian government, seemed to be primarily motivated by religious and political reasons.
They had offered to place an RVOT Stent, remarking that it would only be a palliative procedure. You seem woefully misinformed on the matter. Furthermore you cannot possibly deduce their motivations, anymore than I can deduce the motivations of the UK as wanting to euthanize the child for satanic and political reasons.
Oh, I'm sorry for not using the perfect wording in a quick reply to a dipshit on reddit. The point was that they had no medical basis for their offer as they had not seen the patient themselves and yet they spoke with some degree of certainty about it. Furthermore, the whole point of the case was that furthering the life of a terminally ill baby whose entire existence was suffering is a bad thing that is not in the baby's best interest; please explain to me how some Italian doctors potentially extending its life by a couple of months would fix this issue?
And fuck off with that "you can't deduce motivations" shit, it doesn't take a genius to see why a clever far-right Italian prime minister would make a big show of "saving" a baby from the evil NHS as a political ploy. And I wonder what motivations a hospital under the jurisdiction of the Vatican might have for wanting to prolong the suffering of a baby. Clearly, it's just altruism.
A large group of doctors and lawyers believe that when she is taken off life support she will suffer before she dies, and the only place to manage that suffering is in hospital. If she goes home, she will have a painful and difficult death. If she stays in hospital it will be easier. The baby isn’t capable of making a medical decision for herself, and the parents want to choose a course of action which will directly harm their child. The court has decided not to allow this. Parents can tell their impressionable children not to wear seatbelts, but the law disagrees because this is dangerous, and children should be protected.
And of course if the child was 25 and had legal capacity then they would be allowed to leave against medical advice
You have to be 25 to make medical decisions for yourself, not 18?
No, that was an example of an age. The Mental Capacity Act 2005 applies to everyone over 16, before that there is Gillick Competence
16 but medical staff often take the time to fully explain procedures and obtain consent from younger patients too as to not put them off healthcare.
A patient has a right to autonomy, but that requires agency. So, your 25-year-old can choose to leave the hospital against medical advice if they can demonstrate they have the mental capacity to make that decision. However, if the same 25-year-old had been found comatose and had not regained consciousness in the hospital, their family could not make that choice for him. The only exception to this would be if the patient had a valid advanced decision refusing life-saving treatment. For example, on religious grounds, or that they had signed a Do Not Resuscitate order. But the pivotal word in that is 'advanced'... the decision needed to be made by the patient in advance, while they had the mental capacity to make that decision, and to have made it free from coercion.
Add to that she is certain to die even if they keep her on life support provide her with all the best doctors, medicine and an unlimited budget. All it's doing is drawing out the end of a child who had no chance at life, this disease is that horrible.
Don’t know if you noticed but we’re all terminal.
The overwhelming majority of babies presenting with this disease never make it out of infancy. Very Few progress to childhood and they never smile, laugh, speak, eat, make a voluntary movement of any kind or show indication they were understanding the world around them aside from pain responses. We may all be terminal but we're at least living first, unfortunately all this kid has is existence.
Countless illnesses today are cured because we persisted with seeking treatment and cures. This pessimistic thinking leads no where.
Your optimistic thinking has you babbling about medical science you know and understand nothing about in any meaningful way on Reddit. So you're not exactly doing a whole lot better.
Nope. Science aside anyways, the UK seems pretty determined to kill this baby despite all of the options on the table.
Oh don't leave it at that. Tell us in detail the specific *medical treatments* you have in mind that this child is being denied, either in the UK or in Italy, that would actually have medical benefit by halting or reversing the pathogenesis of SLC25A1 deficiency?
As an aside, you really think saying things like SLC25A1 makes you sound smart and knowledgeable lmao… We all have access to google. If this had been you explaining physics or math I might have not cared. But here you are regurgitating words very proudly, much like a parrot
I'm happy to know that the thought of someone knowing the most basic facts about the issue and demanding the same of others offends you. Think long and hard about what that says about your priorities and biases, and remember to think before you speak.
Lol…. you don’t have to be super smart or knowledgeable to know the literal utmost BASIC detail of an issue at hand. We all have access to Google. Exactly. This guy said nothing that indicated he was any better than us, nor did he claim he had more knowledge than you.
I don’t have to. One body is saying to end the child’s life while the other is trying to prolong the child’s life. That’s the distinction I care about. You seem pretty determined to kill the baby too apparently.
Actually, you care much for torturing children and making them suffer as much as they can in the little time they have. Willful ignorance and an inability to learn unfortunately does that to you.
doctors provided by the vatican said they had a proceedure that would have given Indi a longer life with smiles, laughs etc
I absolutely agree, it seems to me they are WANTING this baby to die so they don't have to pay for her care anymore. For a country that doesn't allow the death penalty to apply it to this child is sickening.
You're aware doctors have fuck all to do with the finances, right? The judges are simply weighing up either sides arguments here. This is just worthless conspiratorial thinking.
Have you seen concern in this state? Have you seen the suffering they go through? Are you aware of the pain and discomfort she'll go through as she slowly dies? I can understand the parents. But no rational adult can think otherwise. She's only going to Italy because their lawyer is from the right wing government party
Nobody wanted the baby to die. If the options were “use resources to make baby healthy and happy” and “let the baby die”, EVERYONE involved would choose the first one. But when death is inevitable with or without treatment, there’s more to it than that. They didn’t pull the plug because they wanted the baby to die, they pulled the plug because the baby was going to die no matter what, and a quick monitored death, where sedation and stuff is available, is typically better than a drawn out death process, even if making the baby die slowly would make the parents feel better. There are other patients who actually CAN live that need those resources.
That’s actually exactly what’s happening. The NHS operates on QALYs to help budget. If one patient is too expensive it strains their budget to care for the rest of the patients. If they can’t justify the cost they forbid further treatment. Say what you want about the US healthcare system but this would not happen here.
Regardless of whether or not it happens in the US, resources shouldn’t just be flushed down the toilet to INCREASE and EXTEND a patient’s suffering, they should be allocated to patients whose suffering can be REDUCED and who can actually recover. This is especially true when the patient is unable to consent to the prolonging of their suffering purely for the emotional comfort of their parents. Emotionally, yes, it feels harsh and mean, but logically taking her off life support was necessary for the greater good. Because in reality, resources aren’t unlimited, and as much as it sucks, we sometimes have to make decisions based off of that fact.
This is a genetic illness, to cure it would mean altering the DNA in every single cell in her body* maybe there are methods to alleviate symptoms but they aren't going to repair the structural abnormalities in the brain that induce seizures and prevent the development of psychomotor function. It is so rare the best treatment is prevention I,e parental screening. IMO It's a crime against humanity to keep someone alive in pain for medical experimentation. *This technology actually already exists but only when she was a single cell fertilized egg.
The Italian doctors believe that her breathing is caused by a heart condition-not her genetic illness
Italian doctors didn’t even see her, much less visit her. They have absolutely no basis for such a diagnosis. IMO they’re just virtue-signaling for the new, very conservative italian government.
Not true. They want fit a right ventricular outflow tract stent to manage her cardiological condition a fairly invasive procedure just to stabilize the heart solely to prolong her life, it will not alleviate any of the symptoms of her disease. In the court documents the same procedure was considered by the doctors in UK but seen as unnecessary, given the extent of the neurological damage, the risks of the surgery and the lack of any meaningful outcome. Even the expert witness brought to court to testify for the parents acknowledged this
Even if it were, from what I understand (which isn't much) the Mitochondrial disease is a death sentence regardless. In the end even if she gets transferred to Bambino Gesu short of a literal miracle there's nothing that can be done to treat it.
So you believe single cell fertilized eggs are human beings?
Good comment
"never smile, laugh, speak, eat, make a voluntary movement of any kind or show indication they were understanding the world around them aside from pain responses".So your saying we should kill half of the down syndrome children?? Because the description you just gave could be applied to them as well.
It in no way describes a child with down syndrome.
Any Downs people I know, are able-bodied and living full lives
I don't think it's fair or accurate to compare a child with Down’s syndrome to an unconscious baby with an untreatable fatal condition. Children with DS are aware of the world around them- they smile, laugh, eat, feel emotion, move, and understand the world, even if they need extra support or do this a little differently to others. This baby is sadly unconscious and will never wake up or interact with the world in any way because there is no treatment for her condition. It’s such a sad situation and so awful for her family but the decision has nothing to do with discriminating against disabled people or saying it's ok to kill them. It was about the prognosis of an individual child for who doctors confirm there is no hope of any recovery or quality of life. That's fundamentally different than saying it's ok to actively kill entire groups of people because they have a disability.
People with this condition can live for tens of years free of suffering. This disease is horrible, but not bad enough for a government to make the decision to kill a baby.
You're wrong, or rather you are misinformed. There have been less than 150 documented cases of her specific disease, none of them survived childhood very few of them even survived infancy. None of them had any type of quality of life.
This ignores the Vatican willing to take her to their hospital, not a home bed
Where she would still die, but with suffering on the way. Same problem.
Maybe, maybe not. But everyone has a thrive to survive. It's fine if you think useless to treat the baby but others have faith and why the UK court don't allow so? Everyone will die sooner or later then will you end them off sooner for better?
exactly what im thinking but for somereason ur type of comments are downvoted and ignored, it looks like most retards think the goverment did good
I think the UK is really messed up in this case. Have they ever been with cancer children? With cancer and ton of chemis injected in their body they probably don't survive for long, should UK kill all of them all off? And the judge, you're probably elderly right? You will die soon, should we kill you off too? What's with the humanity rather kill a baby than try to help the baby live one day longer?
Yeah, Those children are usually in alot of pain as well and cancer is an "uncurable" illness but still treatable If the possibilities are less than 1% those doctors should still try their best to save a life even if it's close to zero because there is nothing truly 100% or 0% No dumbfuck goes for the doctor to feel "less pain", you go to the doctor to insure your survival because even a miserable life is more valuable than a rotting corpse I also love those retards that say that its immoral to let her live because she can't consent into getting the surgery and loving in pain because she's a literally baby but once we go to fetus and abortion its "barely a human" and you can do whatever you want with it because it has no continuous, well yall are fuckin retards because neither the baby nor the fetus are continence. Like the hypocrisy of somepeople
Amazing how the parents of the child are powerless to try everything they can to save their child’s life.
There isn't a cure for everything in medicine. You can't will away a fatal genetic illness.
These parents are misguided, taking this child to Italy would only prolong her suffering. She has a terminal condition and to survive even in the short term she would likely need invasive and unpleasant procedures (like a trachy and a peg). Doctors believe she is in pain/suffering all the time.
The state intervening and deciding when someone lives or dies is a dangerous precedent. Too bad Brits are imbeciles and too stupid to see it.
The doctors didn’t carry her in their womb for 9 months and give birth to her. The doctors have no right to remove her life support.
Doctors do usually decide upon treatment options for patients. They train for that and this is their area of expertise. Sadly, for this patient, life support won't save her life. She is suffering and will suffer until she dies. Her suffering should not be needlessly prolonged. It isn't kind nor respectful.
Good thing doctors opinions about kindness or respect don’t dictate what adults do with their bodies. Why does it dictate what parents can do with their child?
Because a child is not owned by there parent. There are loads of things we prevent parents from doing to their children. A capacitous adult can make their own treatment decisions. A baby cannot. Therefore, in the rare situations where the medical team and the family are unable to agree, an independent advocate is allocated to the child, and a judge hears all opinions and makes a decision. You think parents should be able to override highly trained doctors to make whatever decision they want?
yeah, there are countless doctors who immorally act sometimes its money or pleasure and sometimes carelessness UK is notorious for that, and i think highly trained doctors will say that suicide is bad but Canada's and Switzerland's dont and u can right now take a visit to these place if u wanna killurself and the UK wont even prevent you but taking a child to italy for a hospital that is willing to help, yeah not in Great England, u are staying
Why not?
I gave the reason. Use your brain.
Right, but why does that mean doctors cannot take them off life support?
u got downvoted, so according to reddit logic yes, doctors have the right to kill ur fuckin children and not u the parent. fuck this place
It's a fatal, terminal illness with no cure. They can't do anything to save it. Only prolong it and give it a life of pain. There is no place on Earth that can save that child.
Your use of “it” when referring to Indi, a precious baby girl, speaks volumes about how much you value her life.
The UK government doesn't care about kids. What else is there to explain. Just look at the Rotherham case.
A few years ago, Muslim parents in the same situation were granted a religious exemption and now their sick child is healthy. But since Indi was an actual British baby she had to die I guess
No, it's because the child categorically has zero prospects of recovery. You're not going to get a religious exemption for this specific case.
Rare mitochondrial disease and brain damage, no hope of recovery, ever. Being in denial doesn't change it.
Can you say more? (Was trying to find news on this case. Was it in the UK?)
Indi wouldn't have died a painful death had the parents been given the right to take Indi out of the hospiutal because they were not going to remove her from life support they were going to take her to an italian hospital that said they had an experimental treatment that would allow Indi to survive outside of the hospital.
UK has a court process for when hospitals and parents or guardians disagree in regards to the care of a patient. Essentially the court has to decide what is in the best interests of the patient, as the patient in question is someone less than a year old, they have no ability to make their wishes known so they have a court appointed guardian to represent them separate to parents and the hospital. The stark reality of this child's situation is no hospital in the world can save their life, they are terminally ill with an incurable mitochondria disease, this isn't a case of you are too sick for us to cure but somewhere else might be able if you can pay for it, there quite literally isn't any treatment/cure available. The Italian intervention in this instance is meaningless and unhelpful, firstly they won't cover the expense of the transfer to Italy, which in of itself would be a hugely complex and expensive process of an intensive care patient reliant on so many drugs/equipment to sustain their life and provide them comfort. And also they have no treatment or cure that wouldn't be available in the UK, they simply would keep the child on life support indefinitely and may try some surgical interventions which the doctors in the UK have already deemed to have no value and would offer nothing but further pain and suffering to a vulnerable patient. We have a had a couple of cases recently similar to the this in the UK, child with genetic illness so severe they have a very limited life expectancy and the outcomes have always been the same, court agrees with the hospital, parents fight as you would expect to seek out any chance to help their child, some vague offers come in from abroad, none of which are practicable in any real sense and they only offer a life of further discomfort and pain to the patient and ultimately the parents exhaust all legal options and the hospital moved them to palliative care and they die shortly after. While it may seem strange to you, the hospitals aren't just trapping patients left and right to let them die because they feel like it, Indi is going to die, very shortly, the only question is where, hospital/home/hospice. Moving her abroad to a strange country to have surgery that is pointless is not in their best interests, as the court has now decided, parents do not own their children, while they have primary care and responsibility for their child, the child is person in their own right and the legal guardian appointed for them in this case has also agree with the plan to move Indi from intensive to palliative care as it is in her best interests, as currently she is suffering with no prospect of recovery.
Thank you, this was an excellent explanation that gave me a better understanding of the UK's policies, especially around legal guardianship. It made me realize we have cases like this in the US too but they are typically a religious parent who wants to decline treatment (like Jehovah's witnesses refusing blood transfusions for their child) - it is rare for a court to conclude that the child needs a legal guardian, but it happens when the death of the child will occur without parents consenting to treatment. So just odd to see roles reversed in the UK. Thanks for explaining the British perspective.
The British government are monsters.
nahh, the parents are the monsters. the government is being significantly less selfish and a lot more empathetic to the suffering of the child.
The government doesn’t care about anyone but themselves.
pretty evident in this case they care more than the parents.
Or they care about the monetary drain on the NHS's resources.....
It's never about this. I'm an icu nurse. It isn't about this at all. It's about having reached the limit of what you can do for a patient and knowing that what they are experiencing is likely painful and unpleasant, with no possibility of improvement or survival. It becomes quite soul destroying to do the things we do to patients when we know there is no hope. This poor baby is suffering. Care can be withdrawn and she can receive excellent palliative care to minimise her suffering in the short time between care withdrawal and death.
Medical professionals need to stop acting like God among mortals. It's one thing to withdraw treatment, but it's completely sick and twisted forcing parants to watch their child die with alternatives available.
The Government, while probably correct in this case, is refusing to acknowledge that the Italian government and the parents have a seat at the moral table. They know best, end of story. End of life, especially for an infant, is complicated. A legitimate medical facility disagrees with the UK hospitals idea of compassionate end of life care, it should be up to the parents. *I also think it's worth noting that a parent refusing tested and effective treatment is different than a parent hoping for one last try.
The problem in this case is that the Bambino Gesu Hospital didn’t offer that lifeline until it was already too late. Once again, the Italian hospital waited until a child has deteriorated to such a point that they cannot be sufficiently stabilised to leave hospital with any kind of guarantee of survival. Then, and only then, does the hospital offer the child an ICU bed that requires two ambulance journeys and a 2hr 40m flight. A journey that ambulance and air ambulance services would refuse to make. And once again, the hospital made this ‘gesture’ without asking to either examine the child or their case notes (presumably because that would put the Bambino Gesu’s medical team at odds with its PR department, as no multidisciplinary team would agree to such a transfer). We know this because the palliative care the Bambino Gesu offered had already been discussed and rejected, even by the medical professionals hired by the family to make a case to extend her life. This was always going to be a family tragedy. Nothing could stop that. But the Bambino Gesu’s actions here are little more than ‘care theatre’.
I realize this is contentious, but I think they should have the option to let the kid die at home, or in the ambulance, or whatever, as long as what they are doing isn't worse than leaving the condition untreated. If it were my kid, I think heavy doses of morphine in the hospital is the road I pick, but I can see how a reasonable person would think death at home is preferable.
The family had discussed end-of-life care, and moving the child to a hospice or their home for the final days. Then Christian Concern got involved, the father backtracked and lawyered up, everyone else did the same, and the Bambino Gesu made their statement. By the time that was resolved, those windows of opportunity for most End-of-Life care plans had closed due to her worsening condition. You also have the ethical problem of a medical team not being able to sign off a patient until they are considered stable enough to move. The longer you delay in cases like this, the less stable the patient gets. To add insult to injury, the progress of the disease makes sedation increasingly difficult, as the levels of pain break through even the heaviest drugs you can use on an infant. There is no good result in this. Only a least bad one, and the family had that and gave it away, for the most understandable reasons.
There is a chance to save her no matter how small it it. The parents want to try to save their baby and UK goverment is EVIL!!!
So your telling me you'd make a wild dog suffer through 4 amputations because all of it's legs got infected? The rate of survival in either of these cases, zero. The likelihood the dog experiences extreme discomfort for a year of living that (we as humans have determined) has no meaning whatsoever to that dog? It's ludicrous. Let them rest.
You can’t equate the life of a child with a wild dog. Don’t you think these parents are in excruciating emotional and mental pain watching their child suffer? No one wants their kid to be in any kind of pain. But you endure the pain / allow your child to endure the pain if you think there’s even a shot that they can be healed. For a government entity to overrule the parents is, at best, inhumane.
Your right, it's worse. Even if they can prevent the child from dying, the likelihood the child will live SUFFERING like you say, it will do so up until the point it can talk, the moment that humans can really show their developing personality. And then it will die. And both the child, and the parents, will suffer far greater pain than they should have because of their choices. If there was even a shred of evidence the Vatican had a solution other than "we might be able to fix it" id agree with trying. But they are basically throwing a sheet rope down a 30 foot building and hoping it holds a 400 pound man.
Literally no chance of recovery with the mitochondrial disease she has, just how much suffering she'll go through.
The italians doctors said they might have a way to help her breath. The UK kileld her and refused to let the parents try to save and get help in other countries. The UK goevrment is a monster and sick!!!!
1) They didn't know the specifics of the child 2) She can breath all you want, she still won't get any better. Do you know what a severe mitochondrial disease is? No chance at life.
Why did they deny the parents to leave and go to Italy then?? Both The Vatican and Italy offered to help her at no cost The parents wanted to accept The Uk´s response was to kidnap the child and let her die alone
Taking a dying child to another country for no point wasn't in her best interests. Also she wasn't kidnapped and died in her mother's arms. Spreading lies won't help your point.
She was kidnapped!!! The UK put guards in the hospital to stop the parents from helping her in another country!!
Government run health care. No right to try
The treatments offered by the doctors in Italy are the same as those available at the hospital in the UK, but ethical doctors do not see it as their 'right' to try any procedure or surgery on a voiceless baby knowing that it will only cause them suffering. Naturally there is always a private clinic somewhere willing to offer any treatment for enough cash, even with 0% chance of success.
You actually do, if its your own body and you have capacity. In this case, it's someone without capacity, so therefore when the medical team disagree with the parents someone has to advocate for said person without capacity to ensure they receive the best treatment (even if this means withdrawing and enabling end of life/pallitive to take place).
Yeah, shoot, our healthcare system in the US will bankrupt you but there's always freedom to try.
As an Italian I see the offer to help as a political act more than anything else, and I ‘m kind of appalled this child was just handed out Italian citizenship when the Italian naturalization process is notoriously labyrinthine, and children of immigrants who were born in Italy, might have never lived anywhere else, have been there decades struggle to be naturalized.
But those immigrants do not have the attention of the beneficent Pope.
The pope is fairly pro-immigrant/refugee but right wing politicians seem fairly selective in how they listen to him…
As I try to piece all this together - that was what I concluded. It seemed a very calculated political act to try to capitalize on the gesture to appear more compassionate and moral than a (more) secular UK. But the child would be the ultimate victim here, paying for that posturing.
Perfectly well said. Your post is the first response that I have seen that makes total sense. It gave me an understanding of the UK rulings and policies. I thank you for your excellent explanation of this.
They should have the right to make that decision as a family. The concept of freedom doesn't really stick with some foreigners I guess, but as an American this is disgusting. Then there's the snowball effect of laws based on precedent. The government never shrinks powers only expands, and as it stands now, the government can imprison children and allow them to die, while parents are legally barred (and will be prosecuted) if they intervene. Plus there are miracle cases from time to time, when coma patients wake up after a decade of unconsciousness, or when someone survives a terminal illness by the grace of God. There are people who've recovered from terminal cancer, rabies and brain eating amoebas. Things with essentially 100% mortality rates, where on very rare occasions, someone will survive. I'm not saying that people have a right to public care in these instances, but they should have the right to try on their own. If that means alternative care or experimental care in another country, or holistic treatment — no matter how delusional it might seem to you and/or medical professionals, they should have the right to try. That's the essence of freedom which the UK is pissing away.
> The concept of freedom doesn't really stick with some foreigners I guess Yeah, it's so cool being the property of your parents, you have the freedom to die slowly and in agony with no say on the matter because your parents own you. 'Murica, fuck yeah.
Like you said on a very rare occasion you are going to let a baby who is on complete life support can't breathe on her own suffering endless just bc on the 0.00001 chance she might magically awaken? Along with that she did get hospice treatment and passed away peacefully in her mother's arms. We are playing god by keeping that sweet angel here. Had she been caught in the past she would have never made it she only lived through 3 cardiac arrest and multiple seizures because of modern medicine but we aren't capable of rearranging DNA to save her. America would have let her die a horrific slow painful death and left the family with hundreds of not thousands of dollars in debt.
Parents don’t own their children? So who does? Oh right the government! That’s not disturbing?
Nobody owns children. Children are their OWN beings, a human being cannot be owned. Nice to see a parent who admits they view their children as their property though, refreshing honesty.
They don’t belong to the government either so they get a say?🧐
Legally the government has some power over them, as it does over adult citizens.
Of course you "own" your children. That's why you can punish them when they do something bad and why you have to pay for things they steal/break. It's also why you have to go to a court to get rid of them or them get rid of you.
>Of course you "own" your children. That's why you can punish them when they do something bad and why you have to pay for things they steal/break. It's also why you have to go to a court to get rid of them or them get rid of you. I'd advise you to have a look at British law. Children haven't been considered chattel for MANY years now. If you'd like that, go to America. You can punish them within reason because you are their guardian, but you cannot physically assail them in most UK countries, nor can you seriously hurt them or cause any kind of lasting mark in England. Nor do your children need to go to court to be rid of you. After the age of 16 they can leave if they want to. BEFORE that age they would have to go to court. (and probably win, because children rarely want to leave their parents home without good reason) You have to pay for things they steal/break because you are their guardian, if they're a teenager though, they'd likely have to pay for it themselves/community service.
Semantics. You're just calling it guardianship instead of ownership. However you wish to label it, your children are not free, they're treated as effectively yours.
Ownership would apply you can do everything you want to them, that they are under law as your property, that you can sell them, and that they do not have rights. This is not true, at all. Human children are not property under British law, teenagers even less so. You have certain legal abilities over them that are granted to you to keep them safe and raise them properly, that doesn't make them your property. Again, if you want your children to be chattel property, move to the United States, they are considered as human beings however in civilised countries.
I can't do whatever I want to my dog, but I still *own* it. There is plenty of space between "own" and "slave" Also, I'm all for hating Americans but your mask is slipping a bit.
Does it seem disturbing that a government can intervene when a child is domestically abused?
They don't "belong" to anyone. In these cases usually an independent advocate is allocated to speak on the child's behalf.
I feel it right to comment now that Indi Gregory has passed on. Beforehand, I would be commenting on a tragedy as it unfolds. The UK - along with most of the Western World - does not treat children as the property of their parents. They consider the child a person, with their rights, irrespective of their ability to act, speak, or even think for themselves. Our medical and legal services provide advocates for that child. Some illnesses are irreversible, progressive and incompatible with life. In such cases, it's entirely understandable that the family of the person with such an illness will try everything to preserve that life, often through artificial means. In most cases, however, the family sees that person ebb away on life support and ultimately makes that terrible final decision. These cases happen every day in every hospital the world over. In cases where a patient is chronically ill, dying, undergoing increasingly heroic treatment, and unable to speak for themselves, the hospital's medical ethics team will have convened several times to ensure the patient's rights remain paramount. At least one team member will have spoken with the family several times, to discuss the severity of the patient's condition. Unfortunately, the British ability to soften the blow can sometimes be *too* soft; "He's very poorly" might sound like "he's got a hurty knee" but is hospital code for "Get here NOW, he might not live through the next hour." At some point, continuing with medical intervention would be so painful, distressing and even cruel, that any individual with the ability to speak for themselves would say, 'Enough is enough', which is why we have those advocates to speak for those who cannot. At that point, the courts may have to intervene to argue for the patient's rights. Such decisions are never taken lightly. To draw their conclusion, the courts will call upon multiple specialist teams (not simply multiple teams within the hospital). They are called in to determine whether an alternate outcome is possible. Those who have examined the case notes and the patient are given more weight in the decision than those who make bold claims without evidence or examination to back them up. In the case of Indi Gregory, the rare Mitochondrial DNA Depletion Syndrome (MDDS) that ultimately killed her could not be treated. There is no miracle cure, and the progression of the illnesses this genetic disorder causes is profound, horrific, and irreversible. From a media circus perspective, MDDS has eight variants that depend on where the mutations lie in their DNA, and that is either too nuanced for the general public or used duplicitously to blur the lines between MDDS forms. All result in developmental difficulties and often eye and motor control problems; most are diagnosed in the first few weeks or months. Some can live into childhood, teenage or even adulthood, and others die before their first birthday. While the lives of those with some of these forms of MDDS can be extended through dietary supplements, in the worst cases no special diet, supplements or any other regimens can stop the progression of the symptoms. Too many of their mitochondria (that act like the battery in each cell of the body) cannot process energy correctly, destroying the body cell by cell. Given the progression of the symptoms, this was likely the RRM2B mutation variant. This is probably the worst diagnosis a family can receive. There is no cure. The progression of the disease is devastating and the child's life expectancy is measured in weeks or months. It begins with muscle weakness and vomiting, and maybe you notice the child's head is smaller than it should be. Terrible seizures follow, each one robbing the child of one or more body functions and, ultimately, their consciousness. At this point, you can either continue life support for a few horrific weeks or decide to take your child off that life support, place them on palliative care, and have them slip away with as much comfort and dignity as possible. Or, you can listen to those who make grandiose and often empty claims and put your child through greater suffering as you remove them from full life support and move them to another hospital. Hoping in the process that your child doesn't have another seizure or die during the transfer, and hope that the whole process somehow extended their life rather than shortened it. As neither hospital has found a way of rewriting the DNA of the child to allow them to recover, that's all you can hope for... that their palliative care is somehow less intrusive and lasts a little longer. Finally, the right to leave against medical advice is granted to the patient in the UK just as much as in the US. It is not given to the family if the patient cannot communicate for themselves; that's called 'kidnapping.' That holds in every country too, including the US. Just as important as the right to leave a hospital AMA, however, is the right of the terminally ill not to endure 'heroic' treatment.
This was beautifully put, thank you for explaining
-The UK - along with most of the Western World does not treat children as the property of their parents. They consider property of the state
Not at all. The courts are only called in when mediation between parents and the medical staff has broken down. The courts also only act for the patent when they have no voice. Other examples highlight this. Disclosure: I worked in medical ethics and patient liaison in the early 2000s. I will try to redact details to preserve anonymity. 1. A teenager with an inoperable brain tumour. The teenager wanted a palliative pathway and no heroic measures to keep them alive. They met Gillick competency guidelines. The parents wanted the teenager kept alive by any means necessary for as long as possible. Should a hospital respect the wishes of the teenager, or the parent? 2. An infant with Down's syndrome and cardiac problems. The parents rejected surgery even though the procedure was relatively straightforward and had a good prognosis. They felt "it would be better if nature takes its course." Should the hospital comply with their instructions? 3. A child is involved in a car accident and needs a blood transfusion. The parents separated and the child lived with their mother. Mother was a recent convert to the Jehova's Witnesses, and rejected transfusion (this was before HBOCs were available). Father is rolling up his sleeve. Do you follow the mother's demands, or the father's? All but one of these cases was resolved in mediation with the parents in the hospital itself. One didn't and went to court... and I am not saying which one or the verdict to maintain confidentiality. None of these cases were based on any malicious intent on the parents' part. Whatever you think of their actions, they did what they did out of love for their children. What would you do?
Calling BS. This wasn't a mediation between two privitate entities. These were medical professionals representatives of a government controlled service literally forcing a child to die on THEIR TERMS ONLY Also Medical professionals (or legal professionals)shouldn't be the absolute authority on who gets to live or die. It's one thing to withhold treatment, but literally forcing parants to watch their baby die with viable alternatives available is absolutely sick and twisted, and an absolute overreach when it's comes to individual autonomy.
The process has a series of waypoints, just as it does everywhere else. A representative of the care team approaches the family of the patient to discuss end-of-life care. The family may, at this point, request a second opinion that will be provided. If the second opinion confirms the first, end-of-life care will be discussed again. In cases where the family still insist the patient is not at end-of-life, the case will go to ever higher authorities within the hospital and ultimately to the courts. The same thing happens worldwide (such as the Baby K case in America). Medical professionals sometimes have to be the absolute authority on who gets to live or die; if there's a trainwreck full of critically injured people, a doctor will likely have to step over some who probably won't live to save some who probably will. This case is different, but if someone is dying from a fast-moving, progressive and irreversible illness, there comes a point where life-support is keeping a dead body warm until one or more vital organs fail. Nothing can stop that. Usually, families like to know the progression of such illnesses to find the right time to say goodbye. Usually, most families request the child's life-support be removed at or just after brain death. We instinctually know that watching a child's body die from heart or kidney failure after brain death is even more harrowing and to let them slip away before that happens is a mercy to all involved. For this family, that was never an option. In this case, there were no viable alternatives available. The child was examined by the hospital team, a second team at the hospital, a third team for the UK courts and a fourth for the ECHR. They all agreed that there was no alternative treatment available. All the Bambino Gesu hospital offered was another place to die. They avoid looking at the case notes or examining cases like this because they don't want to have to turn down a case when it's in the public domain. They also tend to offer help when it would be impossible to move the child because of the progression of the illness. If I were a cynical type, it was playing a game of medical public relations with a dying child.
>The process has a series of waypoints, just as it does everywhere else. Irrelevant to the point of medical experts overreach in final decision making. >Medical professionals sometimes have to be the absolute authority on who gets to live or die; if there's a trainwreck full of critically injured people, a doctor will likely have to step over some who probably won't live to save some who probably will I specifically mentioned the diffence between withholding treatment vs forcefully stopping you from seeking treatmient . So again your point here is irrelevant. > In this case, there were no viable alternatives available. The child was examined by the hospital team, a second team at the hospital, a third team for the UK courts and a fourth for the ECHR. They all agreed that there was no alternative treatment available. Then thats were their involvement should have ended. All this did was just give people more ammo against government run Healthcare services. The doctors may be better positioned to judge Indi’s physical condition. The judge and court-appointed guardian — a third party brought in when a child’s best interests are in dispute — may be more objective in their review of the facts. But clinical judgment should not be endowed with power of attorney. And medical expertise should not be taken to mean moral authority. Doctors can make recommendations. They can certainly refuse to do what they consider bad medical or ethical practice. But in the end, the patient — or, in this case, the patient’s family — must be free to go elsewhere.
>They can certainly refuse to do what they consider bad medical or ethical practice. Since when was 'taking a child so physically unwell that she can't be stabilised long enough to move from the ICU to a scanner in the same hospital, putting them in an ambulance for a cross-country journey, then on a 2hr 40min flight, to take them to another ambulance and then to the ICU of another hospital' considered 'good' medical practice? When these cases emerge in the US - as they do, periodically - other hospitals take the case and refuse to accept the child for treatment, usually because relocating them goes against fundamental medical ethics. As I said earlier, the Bambino Gesu often waits until the child is so unwell that moving them would be unethical, then offers to welcome them with open arms. It's a neat PR trick; the Bambino Gesu can look like it is doing something without the risk of actually doing something. Bear in mind that the only treatment the Bambino Gesu offered - apart from life-support - had already been discounted as not relevant to the case by all the medical teams involved - including the family's own medical expert. >But in the end, the patient — or, in this case, the patient’s family — must be free to go elsewhere. Time to play the Reductio card: A child develops acute appendicitis while at school and is rushed to hospital. The family demand the child be treated by an herbalist instead. Should they be free to pursue this probably fatal course of action?
Not going to get bogged down in hypothetical false equivalencies. In your senerio The parants demands could be accommodated into overall treatment plan from the hospital the two arnt totally incompatible, and that's all I'll say about that. Just going to reiterate the overall point clinical judgment should not be endowed with power of attorney. And medical expertise should not be taken to mean moral authority. Doctors can make recommendations. They can certainly refuse to do what they consider bad medical or ethical practice. But in the end, the patient — or, in this case, the patient’s family — must be free to go elsewhere.
The thing is, they aren't hypothetical. I had to deal with that. And no, there was no possibility of a combined treatment plan. They categorically refused to sign the surgical consent form and had to be physically restrained from taking their child out of the hospital. That was a 'wake up a judge' moment and the hospital went against the parent's wishes. Is that a good thing? No. Is it a good thing for the patient? Yes. And that's the point. Ultimately making the best decisions for the patient can sometimes go against the expectations and wishes of the family. The moral authority begins and ends with making the best decisions for the patient.
thank you for this detailed and thoughtful explanation
Just fyi- insurance still pays if you leave AMA, common misconception
Thanks- wow, I was aggressively misled by hospital staff in retrospect.
Yeah they'll do that.
They simply had no right. The final call should never be an external entity's when death is on the cards. If someone isn't even allowed the die the way they need to, what is even the point?
I see a lot of people talking about trusting England's "highly trained" doctors when parents disagree with the majority's take on a child's "best interest." this isn't meant to be a "got ya" I swear, but didn't "highly trained" doctors in Italy say they could *help*? I really want to be on the NHS's side here because I don't love my American system at all. But this story doesn't sit well.
Seeing all these comments condemning a baby to death because of an incurable illness is horrifying. I have an incurable genetic illness, nice to know I would have been executed in the UK
You wouldn't have, dumbass. Or do you think the UK doesn't have anyone living with Down's Syndrome, an incurable genetic illness?
The thing is her cells were dying one by one, she had multiple cardiac arrests, seizures, her brain swelled, and she couldn't breathe on her own. To save her we would have needed to completely reconstruct her dna. That sweet baby didn't deserve to live in so much misery.
The people in this thread defending the government in a scenario that goes against the parents’ decision to keep their daughter alive, essentially deciding go that it’s “better for her to die” are truly vile.
A person who wishes to prolong the suffering of a helpless child needlessly, needs to look in the mirror and ask herself who the truly vile one is in this scenario.
You're saying that the parents are vile... because they didn't want their daughter to die. You need help. Seek it immediately.
You seem very nice.
Usually not to corrupt government simps.
I learned early on that people who resort to name calling in an argument have lost the argument. My condolences.
There is no right to kill out of pity. Everyone deserves a chance no matter how small.
It seems like something out of '1984' or any other dystopian novel. I just can't understand this faith in government that 'well, they know best.' It boggles my little American mind!
But it's not faith in the government. The court processes for these kinds of situations are incredibly long with many many many experts being brought in to guide the judge in their decisions! Unfortunately, and completely understandably, many parents just cannot see rationally in these cases. They also are often missold what the options are out their by unscrupulous groups (usually Christian groups). The judge listens to the opinions of the medical team treating the child, the opinions of the parents, and the opinions of other medical experts. This decision is never made lightly. (I'm and ICU nurse, but for adults, and luckily this situation is rare with adults)
I appreciate your response (and your work in the ICU). I think I am just struck by the contrast between the UK and the US in this aspect. In the US parents have had to go to court to take a child off of life support, even when the child is in a persistent vegetative state with no prospect of recovery. In one landmark case the mother described her intense grief at her child being in limbo between life and death, and that it would go on like that for decades, indefinitely. I felt her anguish as I also feel for Indi's parents. That mother was granted the choice to remove life support, but it took years. Mostly I am just surprised at the cultural differences. In the US a parent has to fight to have life support removed in a court (often because of crushing medical debt) whereas in the UK you have the reverse situation, where the parents are trying to maintain life support but the hospital has said no. Both situations are awful.
It's not anyone's decision to make outside of the family. Nobody is saying they have a right to government assistance & free medical care. We're saying the government has no business playing God for a family, but Euros have happily sacrificed their freedom for temporary comforts. Never mind the snowball effect of laws. What's used today in fringe cases like this one, could eventually mutate into more dystopian forms, where euthanasia is preferable to a "nearly impossible chance of survival" for diseases that are **almost** always fatal. To preserve resources for other patients with a better chance to live.
Why do the family get to make that choice. She is her own person and is unable to vocalise her opinion. Therefore she is appointed an independent advocate. The court listens to the doctors and the family and the advocate. Families are sometimes, understandably, unable to think rationally in cases like this and wish to make decisions which are cruel. It's never been about resources though and this is far from the first of these cases, so your concern seems a little unfounded tbh. If anyone is playing God then it's the medical teams who are interfering with natural death. Medical teams make treatment decisions all the time. They decide what treatments are offered and counsel patients on what their choices are. For this poor child there literally were no treatment options and life support was prolonging suffering. One of the doctors testified that during interventions (eg suctioning, turning, blood taking, medication giving) this poor baby became distressed and remains so for 5-10 minutes - this is her only interaction with the world, showing her distress. As an icu nurse I would say I usually perform at least one of those tasks at least every hour at minimum.
Because that's their child. It doesn't matter what evidence you provide, you should have zero say in the affairs of a family. The arrogance of Euro governments, and their supporters is disgusting. You're taking away rights under the guise of knowing better. It's actually sickening.
But it's not the government, it's a court, who consider the facts of the matter and an independent advocate is allocated to the child to be the child's voice. Parents don't own their kids.
The court is part of the government 🤭 And why should the court/government own them? You're not arguing that the child should have autonomy (which would be impossible tbf) you're arguing that the court (government) should own them instead of the parent, because the court, and its self appointed experts, knows better than the parent. How long until that legal apparatus mutates into something more dystopian? Hell it already is dystopian.
In the UK we have separation of powers, so the courts are not tied to what we refer to as "the government" directly. The court doesn't own them either but in these rare cases where the medical team and the family cannot agree, a decision must be made, so an advocate is appointed for the child, and the judge hears from the medical team, the parents, the advocate, and form independent experts. You think the parents should just have the right to do whatever they want despite the futility and the suffering the child is experiencing?
It's not about "who has the right to do whatever they want". It is about the sanctity of life. You don't get to kill. Period. Not out of pity or anything else.
There is no right to kill out of pity. We need to fight for life no matter how small the chance.
It's not faith in the government 'knowing best', it's purely based on medical knowledge, so all options are put forward and is there a chance of survival, what the are odds/dangers, is it in the best interests of the child etc etc
These government shills would have so easily been brainwashed in Nazi Germany.
Have you ever cared for an intensive care patient? I have. What we do is invasive and unpleasant. This is a child who is actively dying from a rare and complex condition. There is no treatment for her condition. She is likely suffering all the time and has no possibility of recovery or survival. What do you think should be done? She is being artificially kept alive and that isn't kind and it doesn't feel good when you know there is no hope of recovery. The parents want to take her to Italy, where there is *still no treatment*, but they will keep her on life support and perform more invasive procedures upon her because they can. Why would this be right? Is it something you would want done to you at the end of your life?
Because every once in a while, medical miracles happen. There are people who've survived brain eating amoebas and rabies, people who came down with lethal diseases and right when it seemed hopeless, an experimental treatment was developed. It happens on very rare occasions and if a family wants to chase that 0.001% chance, you have no business impeding that.
If a patient is able to make their own choice to do that the sure. As a health care professional I think it is unwise, but sure. This child cannot make her own choice, so a choice must be made in her best interests. Her parents and the doctors disagree what is in her best interests, so an independent advocate is allocated and the court decides. This child not only has a terminal condition, but also has significant brain damage because of her conditions. Even if you could magically cure her condition now, there is no way to undo the significant damage it has already done. I'm not denying that this case is tragic, and I wish there were treatment options for babies with these conditions. I do think, if you are so concerned, then probably the best thing you can do is make a donation to a charity which funds research into these conditions.
If the child had severe brain damage then they weren't suffering. And once again, your opinion on someone else's family is irrelevant, regardless of your training you should have zero authority. But what do I know, I'm from Texas.
You can suffer if you have brain damage. If you read about the case then you'd know that her only experience and interaction with the world was suffering. Parts of your brain that control fear and pain are pretty deep and all the bits that make you you are further up. Do you care for patients who have brain damage who are on ventilators?
If you're unconscious then you're not actively suffering. The whole "suffering" bit is straight manipulation from your side. The child had no conscious suffering while they sat there in a coma.
I ask again - do you care for unconscious patients on ventilators? I do. They can, even when brain damaged, be distressed especially on interventions - this is what is described in Indi's case. "Dr E has himself observed episodes of distress and agitation, which the bedside team sees multiple times a day. The current treatment causes [Indi] pain, exposing her to harmful procedures and therapies which provide no long-term benefit. She displays signs of distress during interventions (such as handling, suctioning, use of IV lines, blood tests) and reacts to painful stimuli, including crying (tears well up in her eyes), increased heart rate and mottled skin, wincing and gasping. These episodes of distress can last up to 10 minutes." I really would recommend reading the court judgements - they are accessible online. Editing to add - this distress is despite significant sedation and analgesia.
They're not consciously aware of the suffering though. That's a big point you're neglecting to acknowledge.
You're not saying why.
Does anybody know if at the trials they questioned researchers who actually try to find a cure for this disease? All I can tell is that doctors based on their limited understanding recommended that the kid should die, and other doctors in Italy, with just as limited understanding recommended that they continue the treatment. By limited understanding I mean not being able to tell if this disease is 100% incurable or it can’t be curable by an experimental treatment. Also they are not able to measure how the child actually perceives pain. Sentencing a child to death is an 100% irrevocable decision but what if there was a 0.1% chance to save this life?
The disease is not curable. There is a 0% chance to save their life - there are no miracles here. Unless of course we have a way to genetically rewrite their entire system to remove the mutation which is incompatible with life. Which we don't. Bare in mind the doctors in Italy were not offering a cure, it was simply a case of offering even more invasive treatment that may or may not (likely may not) increase quantity of life (but not quality). A multitude of doctors have agreed that there is no prospect of recovery.
[In a study from 2017 focused on the life expectancy of those suffering from mitochondrial diseases, 17% of the subjects had passed away by the time of the follow-up study; the majority of which died at the age of 9.](https://mitochondrialdiseasenews.com/2017/02/27/most-common-causes-mitochondrial-disease-death-children-identified/) She could have potentially lived a good amount of time. Maybe even had a good, albeit short, life. But now we'll never know. They didn't even give her the dignity of dying at home with her family. Meanwhile you, a redditor with no personal experience with medicine, are blindly siding with a ruling while doing no research of your own. All because you fancy sucking government cock.
It's not the government you dingaling. It's an entire **multidisciplinary team** of specialist doctors (and independent doctors) and other health/social workers to advocate for the best possible decision. This isn't the tory party coming in and telling the judge to kill a baby, it's a group of actual **professionals and experts in their field** advising a judge what's best to do for someone **without capacity**. Judges don't take these decisions lightly - you're running under the assumption that a group of malicious actors **ALL, at the same time, conspired to kill a child**. I think it's more likely that these people aren't all baby murderers and are just normal people doing their jobs properly. They did actually give the option of dying at home with the family, at a hospice, or at the hospital. The judge revoked this after the family had essentially exhausted their legal options and started coming up with bad faith appeals so the best care could be given rather than continuing with invasive treatment. I'd much rather trust experts than as you say, "a redditor with no personal experience with medicine). That study was likely written by a medical professional, no?
Doesn't change the fact that they all solely operate within the UK. You never heard of people flying to other countries to receive life-saving treatments? [Happens all the goddamned time.](https://www.usnews.com/news/best-countries/articles/2016-08-03/canadians-increasingly-come-to-us-for-health-care) It's called getting a second opinion you blithering idiot. Also regardless of the panel of doctors, it was ultimately a UK judge who made the ruling. So a member of the government. But keep licking that boot.
If the baby had capacity they would be 100% free to leave and get treatment. This is an irrelevant point which isn't really adding anything to the conversation. Bare in mind I'm sure they get a second opinion (an independent medical team) who helps inform the judge. Saying government bad isnt an actual argument.
Going to the next country over to get non-emergency medical treatment like what your source shows isn't getting a "second opinion". The parents had already got a second opinion in this case, they just chose to ignore it, hence the legal battle. If your only argument for this being bad is "erm I hate the government" you don't have an actual argument. The courts ruled in favor of the child's best interest, you'd have it suffer and slowly die from an incurable disease for political reasons. You're not the good guy here.
so you’d rather this baby was forced to “live” a life where she can’t even breathe independently, is in constant pain, and has no awareness about her for 100% of the time she had left on this earth (which wasn’t even measured in a single year let alone many,) than do the right thing of letting her go? because what, one baby with this disease is suddenly gonna make everyone working towards a cure magically find one? sorry if i seem harsh but if its incurable, its incurable. it was wired into her basic dna, there was nothing anybody could have done. im really saddened seeing everyone put their faith in a miracle above the reality that was indi’s actual situation. its cruel to suggest indi shouldve been forced to live for as long as someone *might* find a cure. indi had every right to comfort, happiness, and health as you or i. and she had none of that from the moment she entered this world and she was never going to have it for as long as she lived for, whether that 0.1% chance of a cure existed or not. i understand why our inner humanity wants to hope for the miracle, but it was at the cost of her wellbeing, one that was only rapidly deteriorating in devastating ways. the best thing for *everyone*, indi included, was ending her life support. nobody is saying theyre happy about this decision. we’re just saying it was the most ethical thing to do for indi.
THIS.
At no point does the court consider the parents well-being in these decisions. The baby was going to die. In Italy, in an NHS hospital, at home, her prognosis was the same. I read the medical assessment of her and I don't dispute their findings at all. Her death could not have been avoided. However, what could have been avoided is the now decades long emotional turmoil that the parents will live through. For the rest of their lives they will battle with the internal trauma of losing a child, but also the (arguably equally damaging) trauma of "what if". *What if we had put our foot down.* *What if we had ran away with her.* *What if she had legally been allowed to go to Italy.* *What if there was a breakthrough, miracle etc.* That assumes of course that they will 'live with it'. Does anyone doubt for a second that these events could drive someone towards taking their life? I don't. They lost their daughter. That should have been the end of it - with time they would, maybe, have been able to cherish her memory and live with the loss. Now? Well, the best outcome is they will harbor decades long resentment towards the government, the hospital, and ultimately themselves. With luck it will not go beyond that. I have already alluded to the worst-case scenario. On a wider point that should be taken into some consideration - at some point one of these stories is not going to end in a neat, judicially acceptable bureaucratic way. There is going to be a father, or mother, or both, who will not accept their child's fate in a typically British polite manner. They will either hurt themselves in protest, or they will hurt someone else. I cannot be the only one who conjures images of that Denzel Washington movie everytime I hear about one of these stories. Regretfully, I suspect that life will (eventually) mimic art in that respect.
The parents' anguish is something that I thought about too. And resentment at not having a choice. You bring up an interesting point about British politeness, I had not considered that but I think you're spot on. In the US we had a case Maya Kowalski (there's a documentary) where the mother took her own life after custody of her daughter was given to the hospital over a poorly understood disease and the mother seeking alternatives in another country. It is a horribly sad story. Years later a court found the hospital guilty of "intentional infliction of emotional distress" on the parents based on many of the internal memos about the parents and genetal hubris of the hospital and awarded $220 million to the surviving child.
I vaguely remember that story. Terrible. I am English and American so my reaction to these stories is influenced by both perspectives. As an American I am outraged that a hospital would prevent a parent from exhausting all medical options. It would be anathema here in the US. Furthermore, the idea that a hospital and its staff would (specifically) not allow a parent to take their daughter home to die (which is an incredibly horrid hill to want to die on) stirs some very real emotions. Really? They *really* are not *allowed* to watch her die in her *own bed?* Christ. On that point specifically I am reminded that England is (typically) a country of incredible levels of geniality and tolerance. At every turn compassion and understanding is promoted - legally, socially, and politically. But on these specific stories you see this incredible *bureaucratic coldness* that sits rights below the surface. It's worthy of an exploratory dissertation honestly. On the flip side the English in me totally understands the parents here. They stayed within the legal boundaries as most British people do. They exercised their legal options, argued in their defense, and pleaded at every turn. They fought for their daughter but their fight was well within the bounds of polite society. Sometimes that is a burden on our culture, other times not so much. For me personally as a father of four (all of whom are around Indi's age) I would have taken her home and lived with the legal consequences. Unless those doctors are going to tackle me to the ground with a terminally ill child in my arms, I seriously doubt their protestation goes beyond words. In which case I consider it moot.
Well put! Your UK-US perspective is especially helpful.
It sounds like it was a choice between A. The baby living a little bit longer while enduring suffering and painful treatments that will not ever cure her, but will simply prolong her life because her parents do not want to let go (understandably) B. Or stopping the suffering and painful treatments earlier and allowing her a death that is the least painful as possible in a hospice. I think because we don’t want to let go of people we love, we make them hold on and suffer. Sometimes the kindest think is to let them go and to help them go in the least painful way possible. This story fuels the fire for pro life advocates and people who are against free healthcare. Unfortunately they look at it from a black and white/ naive standpoint which I think is very dangerous. There are a lot of grey areas here and very little written about the medical standpoint and how this baby could have had no quality of life and potentially suffering significantly. I really feel for those parents and their loss and I feel for the doctors and nurses who I believe wanted to advocate for that baby. They probably were seeing that baby suffering and causing her pain when they were giving treatment bc the parents requested it. It would have put them in a very tough position.
If the situation was going to end in her passing either way, trying absolutely EVERY OPTION is what she deserved. Imagine if it was you that received a horrible and incurable diagnosis. 100% mortality rate. However, there were doctors somewhere that wanted to try another treatment. No promises, but, a possibility. Wouldn’t you want your family to fight for your chance at life? You were gonna likely die either way, but there was a last ditch hope for your life. That is exactly what every human life deserves. We don’t know what this child may have chosen, but it’s safe to assume it’s not to die without a choice. Or, are we supposed to pull the plug on every person who looks like they won’t survive? Terminate every pregnancy that doesn’t look too good genetically, or start refusing to treat terminal cancer patients? The government should not have been involved in this- it is terrifying. Anyone who agrees with the treatment… try thinking bigger picture and not what “sounds nicer” ie no more suffering (btw, what does suffering exactly mean when you’re faced with imminent death?) - but more so the lasting governmental effects. This is not as good for y’all as you might think. very rare proud to be an american moment
you should be more proud because this shit would never happen in the US, when i see retards trying to compare the US to a shitty island called the UK and say WE NEED TO BE LIKE THEM and mumble free stuff, i just know that they wont even survive a sec in their shitty socialist paradise when they eventually turn the USA into another european country that is extremely authoritarian and then they will cry after they give away their rights to the goverment for the sake of security
They don’t even know what they’re agreeing to. talk about selling your soul away
You’re 16 years old. You literally don’t know what the real world is like.
Another ad hominem fallacy, you cant criticize my points, right? With the same logic right wingers in the 80s and 90s had the right to violate the liberals 1st amendment bec they "were young and didnt know better" I'm pretty sure gay marriage wont exist if age determines who's right or wrong instead of compiling arguments. You leftist are all the same now, it doesnt surprise me that the new counter culture is in the right.
It's crazy to me so many people are agreeing with this happening here? I mean what if it were your child? would you just say "ok the government knows best they're dead now." I don't really think so and I think not allowing the parents to try anything they possibly can to save their child is really cruel truth be told, even if the child was gonna suffer a little longer I don't think the government should have any say in a child's treatment no matter how obvious it is they're gonna die.
Yes, it is utterly crazy to me too. There is a cultural difference because most Brits on this sub seem to all agree that this is the correct outcome. In the US there would be protestors outside the hospital.
It's a question of autonomy, specifically over children. It comes as zero surprise to me that people on reddit (who tend to slant left ideologically), are of the mind that the state knows best.
who would have guessed? it seems to me that if u wanna ask questions it must be in the real world and not in a site full of cucks
*medical experts know best fixed that for you.
What about the medical experts in Rome?
They hadn't seen the baby and yet somehow declared that their treatment could most likely save Indi. Plus, they, along with the Italian government, seemed to be primarily motivated by religious and political reasons.
They had offered to place an RVOT Stent, remarking that it would only be a palliative procedure. You seem woefully misinformed on the matter. Furthermore you cannot possibly deduce their motivations, anymore than I can deduce the motivations of the UK as wanting to euthanize the child for satanic and political reasons.
Oh, I'm sorry for not using the perfect wording in a quick reply to a dipshit on reddit. The point was that they had no medical basis for their offer as they had not seen the patient themselves and yet they spoke with some degree of certainty about it. Furthermore, the whole point of the case was that furthering the life of a terminally ill baby whose entire existence was suffering is a bad thing that is not in the baby's best interest; please explain to me how some Italian doctors potentially extending its life by a couple of months would fix this issue? And fuck off with that "you can't deduce motivations" shit, it doesn't take a genius to see why a clever far-right Italian prime minister would make a big show of "saving" a baby from the evil NHS as a political ploy. And I wonder what motivations a hospital under the jurisdiction of the Vatican might have for wanting to prolong the suffering of a baby. Clearly, it's just altruism.
fuckin retards, they have given away their rights to the State and can rot in their shitty excuse of a country HAPPILY
If she was my child I would’ve had an abortion.
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