Craniosynostosis ??

Question

Just had our 4 month appt. the doctor is concerned that my babies sutures have fused together already and may need surgery. I noticed at his 2 month appt that his head was shaped funny and quite large. We now have to go to a nuerologist to see what the next steps are. Have any moms out there gone thru this? Has your doctor ever been wrong and you worried for no reason? I'm going crazy! I don't want my baby Dax to have his skull broken apart :( but I know his brain can't grow without it (if that's the real problem). Please help! I included pics of his head shape.

Answer

I had the same concern with my son. My husband was diagnosed with Craniosyntosis at birth, so we have been keeping a close eye on our sons head development. At 3 months I noticed my sons forehead was becoming more prominent, and I felt that the back of his head was also misshapen. We were referred to a neurosurgeon and had that appointment this past Thursday. The doctor was not concerned, he checked my son and said my son was just fine! I hope everything works out just as well for you!!!

Answer

I have been hoping that my sons head is just big, his father and I were both big headed babies and still have big heads lol. But I've just been worrying myself sick that it may also be craniosynostosis. It's hard to really tell his head shape because of his hair.  His 4 month appt is Thursday and I'm so nervous. I will update on what the doctor thinks. *Going to add a picture of his dad (bald) as a baby so you can see his big head.

Answer

My 11yo was diagnosed with craniosynostosis at 2 months. He was born with his sagital suture fused, and it actually fused overlapped, so he had a ridge on the top of his head. At first we thought it was shaped funny from birth canal, but two months later, it had not corrected. I have read of many cases that were undiagnosed, but we were fortunate that a friend mentioned it first, then his doctor caught it. We saw 2 different pediatric neurosurgeons in Atlanta. One offered a procedure done at 6 months that was basically reconstructing his skull. The 2nd offered an endoscopic stripectomy (sp?). He would only do this surgery on babies less than 3 months old. We decided on this option, which included 2 incisions, and cutting the top part of his skull that was fused. It basically left him with a giant soft spot on his head. He was 3 months old, so didn't have to worry about a mobile baby. The doctor required both xrays and a cat scan on his head before final diagnosis.

The procedure was done at Children's Healthcare of Atlanta. It did require a blood transfusion. We spent one night. I wish we had been allowed to spend an additional night because he was in pretty bad pain that next time home and could only use Tylenol and Motrin. We had a pediatric neurosurgeon and a pediatric plastic surgeon that did the surgery and had follow-up visits with both of them throughout following year. Our son recovered quickly, and didn't miss any milestones. At 6 months, the doctor suggested a helmet (star band) to help train his head to grown properly before the soft spot fully healed. We wore that for probably 4 months.

Answer

it almost looks normal shape but can't really tell even in person because of the hair.

Craniosynostosis ??

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