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Newborn hydrocephalus and arthrogryposis?
Hello,
Our baby boy was born last week at 35 weeks and has been in the NICU since, but due to be discharged next week hopefully. He has Hydrocephalus (now shunted, head size at birth was 43cm, now down to 39.5cm), and he was diagnosed with arthrogryposis by an Orthopedic, and also has clubbed feet. He got bilateral femur fractures during c-section delivery because he was breech and wedged in the birth canal. One neonatologist seems to think he has a spinal problem causing his legs not to move. His hips are free, but his knees and ankles are stiff. His knees will only extend out to about 90 degrees. His legs were always in the same position in utero on ultrasounds from 14 weeks on (we had weekly ultrasounds to monitor a large subchorionic hematoma). We had an 18 week fetal MRI at CHoP. We were told to terminate all along and we are glad we didn't. He's had a brain MRI to assess the hydrocephalus, blood tests which came back clean with no genetic or chromosomal abnormalities, and a spinal ultrasound to look for abnormalities and didn't find anything. He does have a tiny sacral dimple, which is why they wanted the ultrasound. He can feel pain in his legs from pin pricks and the broken femurs, but has no movements in then whatsoever, not even a muscle twitch. His upper body is very strong and active. I've tried to lay everything out as simply as I could, does anyone out there have any ideas as to what could be affecting his legs? His doctors seem to be out of ideas.
Our baby boy was born last week at 35 weeks and has been in the NICU since, but due to be discharged next week hopefully. He has Hydrocephalus (now shunted, head size at birth was 43cm, now down to 39.5cm), and he was diagnosed with arthrogryposis by an Orthopedic, and also has clubbed feet. He got bilateral femur fractures during c-section delivery because he was breech and wedged in the birth canal. One neonatologist seems to think he has a spinal problem causing his legs not to move. His hips are free, but his knees and ankles are stiff. His knees will only extend out to about 90 degrees. His legs were always in the same position in utero on ultrasounds from 14 weeks on (we had weekly ultrasounds to monitor a large subchorionic hematoma). We had an 18 week fetal MRI at CHoP. We were told to terminate all along and we are glad we didn't. He's had a brain MRI to assess the hydrocephalus, blood tests which came back clean with no genetic or chromosomal abnormalities, and a spinal ultrasound to look for abnormalities and didn't find anything. He does have a tiny sacral dimple, which is why they wanted the ultrasound. He can feel pain in his legs from pin pricks and the broken femurs, but has no movements in then whatsoever, not even a muscle twitch. His upper body is very strong and active. I've tried to lay everything out as simply as I could, does anyone out there have any ideas as to what could be affecting his legs? His doctors seem to be out of ideas.
He's seen all of those, and they are treating the symptoms appropriately, but don't know why this combination of problems present.
MEDICAL PROFESSIONAL
Babies with the combination of problems that your son has are usually seen by a combination of specialties, including Neonatology, Pediatric Neurology, Neurosurgery, and Orthopedics.
If your son has been seen by physicians from all these specialties, it is likely that he has had an extremely thorough evaluation. If he hasn't, you might discuss with the possibility of further consultation with the physician responsible for his care.
If your son has been seen by physicians from all these specialties, it is likely that he has had an extremely thorough evaluation. If he hasn't, you might discuss with the possibility of further consultation with the physician responsible for his care.
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