Daughter Born with Craniosynostosis

Hi A.,

I'm new here and just saw your post. I was wondering how your daughter is doing now? My youngest was born with Sagittal Craniosynostosis. We had the endoscopic surgery and I'm not overly pleased with the results. She was in a star band helmet for over a year and then they switched companies and that's when things started going south. Someone had mentioned www.cappskids.org. That site helped me so much. Anyways, I just saw your posting and wanted to say hello from another cranio mom. :)

Hi A.,

My good friend's daughter was born with this. She had a very intense surgery at around 3 - 4 months, it took her a couple of weeks to fully recover, but now she's a normal happy wild woman of a 23 month old. You'd never know. The surgery is scary, I can't imagine how frightened you must be. But I can tell you that it's best to 1. not ask too many questions about the actual surgery unless you REALLY want to know the answers (and can handle it) and 2. Do what you need to do to get through it. If that means just you and your partner wait it out alone or you have a slew of people around you, just make sure you are doing what is best for you. I can give you my friend's email address if you would like to chat with her. She's a great resource and a great friend. Email me privately if you want the address.

Take care, give that baby girl kisses.

M.

Congrats on your new daughter!

My son Nick (now 4) was born with a cleft lip and palate, so although I don't have direct experience with craniosynostosis, I know a bit about what it means to have a child with craniofacial anomalies. The surgeries, the emotions... I've been there and I feel for you.

There's a great cranio site at www.cappskids.org -- they have a wonderful forum area. Some other wonderful sites are www.ccakids.org and www.aboutfaceusa.org

Please let me know if there is anything I help you with.

E.

Hi A....
First of all congrats on your baby!
Second of all, welcome to the goup - the mom group of kiddos with un-expected issues. There is a great website called crainology.org that has a ton of mom's and a few dad's who have been right where you are....head on over and give them a shout. And locally, even though my son didn't have Craniosynostosis, he was born with craniofacail deformities, you can email me off list....just to vent your fears. We have done the surgery route many times over.

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I haven't even heard of this before, but my heart goes out to you and your family. I hope that everything goes well, make sure you let us know! Good luck! God bless!

My son was born with Spina Bifida and a slew of other things but we shared a room one time at Riley with a child that had the same problem as your daughter. We saw her before and after surgery. It looked scary but a day after the surgery she was talking and playing. I think she had been through several surgeries before. My son has been through 13 surgeries to date so if you ever want to chat, let me know. If you are going to Riley for any of the care I can send you all kinds of tips for survival :)

My son Austin was just diagnosed with this. We are so scared! How was the surgery?? We are having it done this month. My son is 9 months old! Any helpful advice?