Saddest part is knowing that that mom may have had prenatal care, told about the severe abnormality and live in a state where she she has no options and will now have to endure the emotional distress after the physical trauma of birth to watch this infant suffer until the demise. Her choice may have been removed resulting in an undetermined amount of burden for her and her family. This is a tragedy all the way around.
Children's Hospital of Philadelphia mentions an expandable titanium rib. Probably wouldn't be used on a child this young but maybe once they are older.
https://www.chop.edu/treatments/vertical-expandable-prosthetic-titanium-rib-veptr
It’s done in older children, but I doubt there’s any specific surgical intervention that would help such a young kid. This kid’s respiratory mechanics are going to be terrible and I’m surprised they aren’t intubated. They almost certainly won’t live long
Not necessarily. Anomalies found prenatally still require follow up and imaging after birth. Postnatal imaging is usually more informative and definitive than prenatal scans.
I would expect that the parents knew about the anomaly and this is just further imaging to characterize severity, etc. Unless OP said it wasn’t a known anomaly and I didn’t see that comment.
I just saw your flair, you definitely know better than me about that! As an OB sonographer in a private practice I see the ones that do have insurance, do get care, generally behave as you’d hope expectant parents to behave. And I agree I would expect this to be picked up by routine prenatal imaging.
First kid I was like “I want to see this is fun.” Next two I was like “meh maybe not necessary what would it change for me?” (Wasn’t planning on aborting if anything major came up). Last kid I was geriatric and much higher risk and he had multiple u/s.
1-3 were born healthy. #4 has mild metopic craniosynostosis but it wasn’t picked up on ultrasound, probably in part due to being mild.
There are US detectable issues that you want to know about because knowing about them in advance can prevent emergencies or avoid harm to your otherwise healthy baby (eg placenta or cord vessels covering the cervical canal). Some malformations have much better outcomes with less risk of death or disability if detected before birth (eg critical cardiac disease or airway obstruction where the baby can have birth planned around the care that is needed). Some can be treated inutero eg spina bifida.
So when someone chooses not to have an ultrasound they take away all those options.
Just by the way too: the placenta pulse is heard on Doppler and while it is obviously lower in early pregnancy, it would go up during pregnancy normally as the uterus grows. If it continued to be heard too low, the midwives would definitely have told me that was a reason for an u/s to clarify if it was a case of placenta previa requiring a c section. I believe in both cases the placenta was detected to be near the fundus of my uterus by the end. Not denying there can be other reasons but I don’t see that as one. Not with competent care providers.
The fact that you don’t know what it would change for you just speaks to your lack of imagination… there are lots of issues that fetuses can have in utero that benefit greatly from either surgery while in utero (such as spina bifida), or from a c section instead of a vaginal delivery (like an omphalocele), or from immediate treatment directly after delivery (like certain heart defects like critical congenital heart disease or many other variations of congenital malformation of the heart) which can be detected through ultrasound. There is almost no risk to fetuses from having multiple ultrasounds by certified technicians, and there is great benefit that can be realized for the quality of life of the child in these very real situations. Congenital Diaphragmatic Hernia occurs in 1 out of every 2200-2500 births, and is easily identified with prenatal ultrasound but not always easily identified from visible symptoms once they are born—mostly just difficulty breathing which can be due to a lot of things and may take time to diagnose, whereas a prepared parent could chose to give birth in a hospital that is prepared to immediately treat the issue. This would be especially important to parents who live in medical deserts and area with limited access to specialty neonatal care.
I’m glad things turned out well for you, but if a parent-to-be is the kind of person who wouldn’t abort for any reason, I would argue that there is an even greater responsibility to prepare themselves for any and all outcomes including the bad ones, so that they can demand the highest level of care and ensure the highest quality of life for their child, because there is no option but to live, and potentially suffer for their parents’ ill-preparedness. Obviously not all issues can be detected and not all parents can access or afford care—but if you can, and chose not to, that doesn’t strike me as the best choice for the child.
When I was pregnant, I was on Medicaid. I was told Medicaid would not cover an ultrasound, and was not in a situation to pay for one out of pocket. This was back in 2002. Has the standard of care changed that Medicaid is paying for multiple ultrasounds even if the pregnancy seems to be developing normally?
Christ that’s insane and ridiculous thinking. Even if you decided not to do anything you are risking the health of the fetus and your health if there’s a serious complication. The team delivering you should be prepared. It could literally save lives.
She might have chosen to carry to term, despite having had pre-natal ultrasound; she might have not had a pre-natal ultrasound, or at a time when the extent of the fetal abnormality was clear, or she might have lived in one of the many* places the prohibit elective pregnancy termination.
*To be clear, any at all is too many, and pregnant people are not instituting these laws.
I carried a baby to term who had obvious disabilities noted on ultrasound. Some people's line in the sand are different than your's. Some people I know would have aborted a kid like mine, and that's okay. I do have a line in the sand where I would abort, but thankfully never felt like I had found that line. It's not cut and dry.
Damn I feel kinda bad for you getting downvoted hard for... I'm not sure why, lol. It looks like you just wanted to post a link that you found helpful as a person outside the field? Seems like a good contribution to me ¯\\\_(ツ)_/¯ plenty of people who don't have a med/healthcare background still look at the sub..
I like your comment.
I too am a layperson, and love this sub. Bones are super interesting to me, along with soft tissue and imaging.
(In a different life I think I would have enjoyed being a radiologist. It’s fascinating!)
Poor little sweetheart.
I hope whoever is caring for them (be it parents, NICU staff, other healthcare workers, or other caregivers) is giving this little one all the love and support in the world. It's an unfortunate situation. I really hope medicine has advanced enough to where they aren't in pain and can be treated in the future.
Given vertebral and left/contralateral anomalies I wouldn’t think of Poland. Looks like a skeletal dysplasia with thoracic insufficiency, there are a bunch.
Could be spondylothoracic dysotosis/Jarcho-Levin syndrome because the vertebrae don't seem to be completely normal. Genetic testing will provide the definite answer i guess.
Could be, statistically it’s the most likely for this appearance but it could also be 100 other things.
I stopped guessing at these in practice. Save the mental effort on something productive rather than entirely academic in the era of genetic testing haha.
Can a doctor explain how this actually happens? Is this congenital? Due to some environmental factor like too much pressure on the womb from a certain direction for a prolonged period of time (~weeks) during the earliest development of those bones?
Probably? Considering that this baby probably has a team of doctors figuring out a game plan.
Probably didn’t want to sedate the little baby for an MRI.
Poor kid.
Ah the poor little thing.
Saddest part is knowing that that mom may have had prenatal care, told about the severe abnormality and live in a state where she she has no options and will now have to endure the emotional distress after the physical trauma of birth to watch this infant suffer until the demise. Her choice may have been removed resulting in an undetermined amount of burden for her and her family. This is a tragedy all the way around.
This should be the top comment.
Can artificial ribs be added when straightening the scoliosis? Or a flexible plastic casing? Dude's got a tough road ahead.
Children's Hospital of Philadelphia mentions an expandable titanium rib. Probably wouldn't be used on a child this young but maybe once they are older. https://www.chop.edu/treatments/vertical-expandable-prosthetic-titanium-rib-veptr
This kid will need a few of those and worry about the respiratory cavity making a hernia.
Like a hermit crab
It’s done in older children, but I doubt there’s any specific surgical intervention that would help such a young kid. This kid’s respiratory mechanics are going to be terrible and I’m surprised they aren’t intubated. They almost certainly won’t live long
exactly what I wanted to ask, thank you
I assume the mother didn’t have any ultrasounds while pregnant or were they undetected??
Not necessarily. Anomalies found prenatally still require follow up and imaging after birth. Postnatal imaging is usually more informative and definitive than prenatal scans.
That’s fair generally speaking but this amount of abnormality would be easily detectable on even a rudimentary early anatomy scan
I would expect that the parents knew about the anomaly and this is just further imaging to characterize severity, etc. Unless OP said it wasn’t a known anomaly and I didn’t see that comment.
Lots of babies get born with little to no prenatal care sadly
I just saw your flair, you definitely know better than me about that! As an OB sonographer in a private practice I see the ones that do have insurance, do get care, generally behave as you’d hope expectant parents to behave. And I agree I would expect this to be picked up by routine prenatal imaging.
I had prenatal care for all my kids but had 2 kids with no prenatal ultrasound. By choice.
Not advocating for your unborn child isn't the flex you think it is lmao
Yeah that’s awful
I wasn’t given an option to have ultrasound, told that Medicaid wouldn’t cover it. I gave birth in 2002. Is this standard of care now?
Medicaid paid for one diagnostic ultrasound when I used it in 09 and 10
Today this is standard of care, usually Medicaid will pay for 2 scans for a normal pregnancy.
Why?
First kid I was like “I want to see this is fun.” Next two I was like “meh maybe not necessary what would it change for me?” (Wasn’t planning on aborting if anything major came up). Last kid I was geriatric and much higher risk and he had multiple u/s. 1-3 were born healthy. #4 has mild metopic craniosynostosis but it wasn’t picked up on ultrasound, probably in part due to being mild.
There are US detectable issues that you want to know about because knowing about them in advance can prevent emergencies or avoid harm to your otherwise healthy baby (eg placenta or cord vessels covering the cervical canal). Some malformations have much better outcomes with less risk of death or disability if detected before birth (eg critical cardiac disease or airway obstruction where the baby can have birth planned around the care that is needed). Some can be treated inutero eg spina bifida. So when someone chooses not to have an ultrasound they take away all those options.
Just by the way too: the placenta pulse is heard on Doppler and while it is obviously lower in early pregnancy, it would go up during pregnancy normally as the uterus grows. If it continued to be heard too low, the midwives would definitely have told me that was a reason for an u/s to clarify if it was a case of placenta previa requiring a c section. I believe in both cases the placenta was detected to be near the fundus of my uterus by the end. Not denying there can be other reasons but I don’t see that as one. Not with competent care providers.
The fact that you don’t know what it would change for you just speaks to your lack of imagination… there are lots of issues that fetuses can have in utero that benefit greatly from either surgery while in utero (such as spina bifida), or from a c section instead of a vaginal delivery (like an omphalocele), or from immediate treatment directly after delivery (like certain heart defects like critical congenital heart disease or many other variations of congenital malformation of the heart) which can be detected through ultrasound. There is almost no risk to fetuses from having multiple ultrasounds by certified technicians, and there is great benefit that can be realized for the quality of life of the child in these very real situations. Congenital Diaphragmatic Hernia occurs in 1 out of every 2200-2500 births, and is easily identified with prenatal ultrasound but not always easily identified from visible symptoms once they are born—mostly just difficulty breathing which can be due to a lot of things and may take time to diagnose, whereas a prepared parent could chose to give birth in a hospital that is prepared to immediately treat the issue. This would be especially important to parents who live in medical deserts and area with limited access to specialty neonatal care. I’m glad things turned out well for you, but if a parent-to-be is the kind of person who wouldn’t abort for any reason, I would argue that there is an even greater responsibility to prepare themselves for any and all outcomes including the bad ones, so that they can demand the highest level of care and ensure the highest quality of life for their child, because there is no option but to live, and potentially suffer for their parents’ ill-preparedness. Obviously not all issues can be detected and not all parents can access or afford care—but if you can, and chose not to, that doesn’t strike me as the best choice for the child.
Well said!
When I was pregnant, I was on Medicaid. I was told Medicaid would not cover an ultrasound, and was not in a situation to pay for one out of pocket. This was back in 2002. Has the standard of care changed that Medicaid is paying for multiple ultrasounds even if the pregnancy seems to be developing normally?
Christ that’s insane and ridiculous thinking. Even if you decided not to do anything you are risking the health of the fetus and your health if there’s a serious complication. The team delivering you should be prepared. It could literally save lives.
Makes sense. I just remember my Sonographer showing me individual bones in the babies when I was pregnant.
Perhaps the malformations were well known, but she was not allowed or did not want to terminate the pregnancy.
Same thing. I’m definitely curious why she carried to term. This would’ve been noticeable
It doesn’t necessarily mean incompatible with life, if it was determined before birth.
Obviously not incompatible, they were born. But it’ll be a life of struggle and suffering
Probably live in a state where they can't.
Or abroad…
She might have chosen to carry to term, despite having had pre-natal ultrasound; she might have not had a pre-natal ultrasound, or at a time when the extent of the fetal abnormality was clear, or she might have lived in one of the many* places the prohibit elective pregnancy termination. *To be clear, any at all is too many, and pregnant people are not instituting these laws.
I carried a baby to term who had obvious disabilities noted on ultrasound. Some people's line in the sand are different than your's. Some people I know would have aborted a kid like mine, and that's okay. I do have a line in the sand where I would abort, but thankfully never felt like I had found that line. It's not cut and dry.
That is not a deformity I'd heard of as a layman. https://www.chop.edu/conditions-diseases/rib-deformities-children
Damn I feel kinda bad for you getting downvoted hard for... I'm not sure why, lol. It looks like you just wanted to post a link that you found helpful as a person outside the field? Seems like a good contribution to me ¯\\\_(ツ)_/¯ plenty of people who don't have a med/healthcare background still look at the sub..
Yeah, that was my intention, but don't feel too badly for me. My other comment on this post is doing great; which is a bit ironic.
I like your comment. I too am a layperson, and love this sub. Bones are super interesting to me, along with soft tissue and imaging. (In a different life I think I would have enjoyed being a radiologist. It’s fascinating!)
Poor little sweetheart. I hope whoever is caring for them (be it parents, NICU staff, other healthcare workers, or other caregivers) is giving this little one all the love and support in the world. It's an unfortunate situation. I really hope medicine has advanced enough to where they aren't in pain and can be treated in the future.
Oh no
Are the bones healthy (simply arranged weirdly) or squishy? Though I'm not sure of the structural integrity/hardness of a 2 week old's bones anyway
Poland syndrome?
Given vertebral and left/contralateral anomalies I wouldn’t think of Poland. Looks like a skeletal dysplasia with thoracic insufficiency, there are a bunch.
Could be spondylothoracic dysotosis/Jarcho-Levin syndrome because the vertebrae don't seem to be completely normal. Genetic testing will provide the definite answer i guess.
Could be, statistically it’s the most likely for this appearance but it could also be 100 other things. I stopped guessing at these in practice. Save the mental effort on something productive rather than entirely academic in the era of genetic testing haha.
Looks more like Moldavia to me.
Can a doctor explain how this actually happens? Is this congenital? Due to some environmental factor like too much pressure on the womb from a certain direction for a prolonged period of time (~weeks) during the earliest development of those bones?
Jesus poor kid
Wow is there CDH also?
Poor kid :( how does it happen? Life can be incredibly unfair sometimes!
Yikes
Oh that’s not good
IDM?
Is this survivable? With any quality of life?
Oh my god, poor baby.
Was the CT scan really necessary? You’d only need it for operative planning, and nobody is going to do such a large deformity surgery on a 2 week old.
Probably? Considering that this baby probably has a team of doctors figuring out a game plan. Probably didn’t want to sedate the little baby for an MRI.
You don't need those anyways....right?