Had appointment with cranial facial doctor last week

babystinkbreath · May 2012

And they are worried that Cassie might have Craniosynostosis, or premature closure of the sutures in her skull. She has some pronounced ridges on her head and the soft spot in the front of her head appears to be closed. However, the ridges appear to have gotten a lot better over the past two months.

She is scheduled for a 3-D CT scan of her skull in two weeks to see for sure what is going on. If they are closed she will need surgery to correct it. I'm praying this is not the case but part of me is already resigned to the fact that she will need the surgery. (this way I can be relieved if she doesn't need it rather than overly upset if I thought she didn't need it)

Anyone else deal with this? Any words of wisdom? I'm trying not to freak out before I know more info but I just don't want her to have to go through more medical intervention at this point.

LIAngel · May 2012

I have no words of wisdom to offer, but I can offer a hug. (((HUG)))

chickaboo1974 · May 2012

My good friend's son had this- he had surgery and now is a happy healthy 10 year old- the only time you know anything happened is when he shaves his head and you can see the scar.

rosesandpeonies · May 2012

I will be thinking of you and your family. Jorge Posada who was the Yankees catcher has a son that has craniostynosis. Here is a link to his foundation

https://jorgeposadafoundation.org/home/

at one time I thought his wife had a blog about it, but I couldn't seem to find it on a quick search.

Many prayers and good thoughts being sent your way!

ETA: as part of his foundation they have a mentoring section to speak directly to other parents.

JillAly · May 2012

My son had a flat spot on his head and it was severe enough to send us to a plastic surgeon. He happened to be the dirctor at NY University of the Cranio-facial pediatric department. We sat in the waiting room every time with kids who had craniostynosis and I talked to some of the moms. They all said basically the same thing. Finding out the problem was the worst part. Once they knew and knew that the surgery would correct the problem, a weight was lifted off them. I saw the kids and they were all running around like any other kid (almost all were post surgery). I can't say it isn't scary but I'm sure you'll find a great surgeon who has done the surgery a lot and know that once you're past that stage, everything will be ok!

kimarino13 · May 2012

My coworker's son had this. He had the surgery and wore a helmet for awhile and is perfect now! If you want to get in touch with her, email me at kimarino13 at gmail.

Good luck!

sherryberry2 · May 2012

No words of wisdom but sending prayers and positive vibes your way!

Dragonfly1226 · May 2012

I don't have any personal experience with Craniosynostosis, but I want to send tons of T&Ps that Cassie doesn't have to have surgery. (FWIW, P had to have surgery to correct hypospadia when he was 6 months, and it was way harder for me than it was for him.) (((((hugehugs)))))

steveandkim2 · May 2012

Lots of t and ps that sweet Cassie doesn't need surgery! I know how scary the thought of surgery is. My DS is having hypospadia surgery in a few weeks and I'm nervous, but kids are so resilient and bounce back quickly!

GypsyEsq · May 2012

No personal experience but I'll be thinking of your LO and you as you navigate this new hurdle. (((Hugs)))

DeputiesWife · May 2012

no words of wisdom but wanted to let you know I'm thinking of you guys.

patchen30 · May 2012

((Hugs)). I think this is pretty common and the vast majority of the time everything turns out to be just fine.

babystinkbreath · May 2012

Thank you ladies for all your kind words and encouragement. And you are soooo right, I think it is harder for the parents than it is for the baby! Cassie has already been through so much it just breaks my heart that she might need surgery on her head after recovering from a stroke. But you are right, they are so strong and bounce back so fast.

Now I just need to get to the 22nd to find out what is going on.

njdcgirl · May 2012

Sorry that your LO may be facing this. I don't have any direct experience, but another friend of mine through our NICU experience had this at about 9-10 months. If you want me to connect the two of you, I'd be happy to - her daughter is doing just fine now (several months later). Let me know, and good luck at your appointment.