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Sagittal Craniosynostosis

Melissa - posted on 02/15/2010 ( 7 moms have responded )

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Hi there - I'm new to this, so hopefully my posting works okay!!
We have an 8 week old daughter who's the light of our lives. She was diagnosed with sagittal craniosynostosis at birth, and we had her CT scan done last week (which she had to be sedated for :(.
We are meeting with the neurosurgeon on Monday, but according to our pediatrician the CT Scan has confirmed three fused sutures.
Did any of your kids have sagittal synostosis? And if so - how'd the surgery go and at what age did they do it? Apparently her lambdoid suture is involved as well.
Cosmetically there are no problems, but I think they worry that eventually there could be developmental problems. Thanks for any input.
PS. I'm sending any cranio moms reading this a big hug too - very difficult time for a new mom.

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Heidi - posted on 02/22/2012

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hi melissa i was just reading about ur baby girl my first boy had the some as ur little girl and hes 9 now and doing really good has learning and behaviour diff me and my partner went and got tested and come back that he was 1 in a million and now i have a 4 year old boy and he just finished having his sugery but his was a bad case his hole skull closed off at 3 had rods in for 5 month just removed them in aug 2011 and now where going back on friday as i think his skull has closed again hoping not but i wish u and ur little angel the best of luck with everything xoxo

Melissa - posted on 05/25/2010

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Interesting Amber! Very glad to hear he's doing well.
Did he have both sagittal and lambdoid involved? I believe Ava's is called "Mercedes Benz Syndrome".
They said Ava doesn't need to wear a helmet, but I can't help but worry a bit if she bumps it as she begins to crawl and move around more... I think I'll ask the neurosurgeon about it again at our next appointment.
Melissa

Amber - posted on 05/24/2010

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My son had the same condition and he had his surgery at 4 months old. He is doing wonderful now and will wear his helmet until the end of August (1 year post surgery)

Melissa - posted on 05/23/2010

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Hi Amy - thanks for checking in!
Ava's doing great. Her MRI is scheduled for two weeks from now to make sure everything looks good.
The MRI's are a bit difficult because she needs to be sedated, but nothing like the surgery...
I know she's come through it with flying colours :0
Her scar is healing nicely and her hair is covering it.
And really... Thanks again for your kind support.
It sure is tough dealing with some of this!!
Melissa

Amy - posted on 05/23/2010

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Melissa
Just checking up on how you are doing and how that baby girl of your is doing I pray all is going well and that you have gotten more support and answers to your questions Please Let me know how things are going!

Amy

Melissa - posted on 02/16/2010

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Thanks for your response Amy. I'll definitely check out the website. So reassuring to know other moms have gone through this.
She's our first, and it is tough. I have so many questions... And it seems that this is quite rare and even our pediatrician told us that - as parents of a cranio baby - we'll likely research and learn more about it than many of the doctors we end up speaking with.
We were planning on having more children, but who knows now... Our genetic testing is set to start in March.
I'll definitely keep in touch. Thank you for your contact info. and for starting this group.
Melissa

Amy - posted on 02/16/2010

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Hi Melissa there is a fantastic website you can also go to called Capps kids I am on that site too those Moms are Very supportive and have tons of in formation they will share with you



I know how scary and stressfull this is my heart goes out to you and I am here if you need to talk vent or cry I can give you my phone numer if you'd like it...I have been there I know how it feels

keep your chin up you ARE stronger then you know and so is your baby girl! my number is 817-306-0776 my email address is Amy1706@gmail.com



please know that you are not alone.

take care,

Amy xoxo

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