Love to chat with anyone

[Patricia]

Hello everyone! My name is Patricia and my son's name is Liam. We are from Alberta, Canada. My son was born with saggital synsostosis and had surgery when he was 2 months old. He wore two helmets for a total of three months and now he has lots of hair! He is doing wonderful but I am afraid that his head shape will shift and that he'll have to have another surgery. I would love to hear from anyone or share my story if someone is interested. I still have a hard time dealing with the emotions of it all. Hope to hear from you soon.

Sincerely,
Patricia

[Jennifer]

Patricia- I'm glad you've found us. You've found an excellent group. We'd love to here more of your story. Share your story, your joys, your fears....we all totally understand as we've really been there or are going there....
I don't know if the fear of having another surgery will ever go away. I've been assured that we should be done, but there is still that doubt in my head....I guess that's what we do as a parent....constantly worry!

How old is Liam now?

Again- WELCOME!

[Lori]

:welcome

Hi Patricia, you've stumbled onto a gold mine for support! I love it, even this late at night when I can't sleep! Wondering how long Liam was in surgery?

[Patricia]

Thank you for responding! My husband is not as much of a worry-wart as I am and my family always says "don't buy trouble". Not very helpful when you lay awake late at night crying because your worried about your baby and worried about having another child with the same syndrome. The day after my son was born, a pediatrician informed us that he was concerned about Liam's head shape and thought that his plates were prematurely fused together and sent us to a Neurosurgeon. Unfortunately he confirmed our worst fears. He had surgery at two months old at the Stollery Children's hospital in Edmonton, Alberta. (An amazing hospital). His surgery was about 2 hours, he had two Neurosurgeons working on him so that cut the time in half. He did amazing for recovery. He swelled up a little the next day but his eyes didn't swell shut and the next day after surgery he smiled at me (I broke down in tears-again) and we were out of the hospital four days later. Liam is now almost 8 months old and doing very well. He has always been a very happy baby that doesn't fuss that much. Before the surgery I think he had pressure on his head because at the end of the day he would cry a lot like he was in pain but he wasn't colic. I am so glad a came across this website, I feel so alone in my constant pain and worry. We have to go back to the hospital for a checkup in April and check his head index to see if the percentage has changed. Currently his index is at 86% which is wonderful. I notice his forehead is the most noticeable, very boxy looking. I worry about him being self-conscience later or about children picking on him or thinking he is "different".
Any helpful hints of what to watch for or be prepared for? Can you be tested for this gene to see if you are a carrier?

Thank you for your support, I look forward to your repsonses.

Patricia

[Katie]

Hi Patricia, welcome! Unless there is a family history of craniosynostosis, or cranio syndrome, then the chances of having another cranio babay are the same as any other couple (1 in 2,000 I believe). Did the Dr's mention that they thought Liam might have syndrome related cranio? It is something that can happen spontaniously with no rhyme or reason, and if they don't suspenct a syndrome, that is probably what it is. A genetecist can go over family history with you, and look at Liam to let you know if he/she thinks it's syndrome related. If he feels it is, they can do testing to see which syndrome it may be. Although, the testing can be very pricey and most only have a 60 to 70% chance of picking up the defective gene.
Is your NS or craniofacial surgeon doing follow up every six months or so? Dillon's Dr's have been very patient with me. I must have called them several times a week for the first few months out of surgery :giggle
We're glad you found us :hugg

[Lori]

:howdy Hi Patricia, you are not alone, as mothers of cranio kids we worry! Sounds like you've been through the hardest part. The emotions are tramatic and it does help so much to share your feelings and fears. You've been through alot, and you made it ok, more than ok, he is beautiful!

It is a mothers job to worry and some of us are really good at it! :yes