My Mom (born in 1956) had it and needed two surgeries to "crack" her skull and allow for growth. She has no long term affects, other than scars and is actually above average intelligence. Technology has come such a long way since then too. Good luck!
My nephew has craniosynostosis (he had his surgery around 4 months old), and is doing wonderfully. He's almost 2 now.
My sister (his mom) and I, along with his doctors and other parents, have been working on starting a craniosynostosis/craniofacial awareness nonprofit, so between that and actually having a child in the family with the disorder, we have gathered a ton of information.
If you want, send me an email (brookeawestling@gmail.com) and I'll put you in touch with my sister and the whole group! Hope we can help
I don't have personal experience with craniosynostosis but because my son was born with a cleft lip and palate, I have found some site through a cranio-facial support group. https://www.halosandwings.org/ this website is to a local organization that sends out a care package to kids going through the surgeries. The also have some websites with some good information.
My DD had it--right coronal suture was fused. She had surgery at 1 year old, and she is doing well at almost 2 years later now. She does have many developmental delays though. Let me know if you need any info.
My daughter was diagnosed at 4 months and is having surgery in 2 weeks. She has sagittal which is the most common. I was actually just about to post this same question. The internet has been the most helpful resource as I have not found anyone locally to talk to. Check out craniokids.org and they also have a support group on facebook.
My son was born with it, sagittal and left coronal. He was diagnosed very close to birth and had surgery (CVR) at 5 months. He is two now. He is mostly typically developing. He has/ had a very minor speech delay. He did not qualify for services. So many children have speech delays that I can't say that it is related to his cranio. He still has a small hole in his skull that will have to repaired before he goes to school but that should be a minor procedure compared to the first one. Craniokids.org is great. I got so much information from the forum. Seeing how many children had gone through the surgery made me feel so much better about it.
Re: Craniosynostosis?
My nephew has craniosynostosis (he had his surgery around 4 months old), and is doing wonderfully. He's almost 2 now.
My sister (his mom) and I, along with his doctors and other parents, have been working on starting a craniosynostosis/craniofacial awareness nonprofit, so between that and actually having a child in the family with the disorder, we have gathered a ton of information.
If you want, send me an email (brookeawestling@gmail.com) and I'll put you in touch with my sister and the whole group! Hope we can help
Take a look at that.
https://www.zoloft-lawsuit-center.com/Craniosynostosis-Birth-Defect.html
Seen this before ?
https://www.zoloft-lawsuit-center.com/Craniosynostosis-Birth-Defect.htmlMy son was a born with metopic synostosis. He had a cranio vault surgery performed by a craniofacial team in Dallas.
His story is in the blog below.
Big - 1 year old
Bigger - 6 years old
Biggest - 13 years old