Sagittal Synostosis in 2nd child??

[Ryan's Mom]

It has been a long time since I've been on here. We began our journey with all of this about 5 years ago with my son Ryan (our 2nd born). Ryan was born with sagittal synostosis and it was quite apparent that something wasn't right by the time we left the hospital.

I just recently gave birth to my 3rd child, another boy, and am concerned that he too may have it. His head is not nearly the shape that Ryan's was, however, that all telling ridge along the sagittal suture is quite pronounced. I was hoping that it was all overlap from coming out of the birth canal, but the other sutures that seemed overlapped have since corrected but that sagittal suture is still very much there.

I've understood that the odds of us having another would be quite slim or at worst, no greater than that of the general population.

I am wondering if there are others out there that have more than one child with non-syndrome sagittal synostosis and am wondering what you have learned.

Advice appreciated.

Thanks!

Brenda

[rashleigh]

brenda, i have 4 children and the first boy was non-cranio. my last 3 children have all had cranio. we have had genetic testing and there is no gene or any science to back up why this has happened to us 3 times. all i know is that cranio is on the rise and there is no explanation as to why :( my 3 boys with cranio all presented differently but none the less they had it. we are the first family that our cranio dr has ever had where it has happened 3 times in one family. Science and genetic testing showed nothing for us. my boys are the first ones on both sides to have cranio

[AJ's Mommy]

Hi Brenda!! Welcome to cranio kids!! Glad you found us!!

[jjmc123]

:colors how old is your baby? My sister just had a baby and I noticed a very prominent ridge on the coronal sutures. It went 100% away within a few weeks.

[Ryan's Mom]

Carolynn - I appreciate your reply. My heart goes out to you having to deal with this so many times. I wish there were more concrete answers to all of this but I guess that's asking too much.

Cindy - Chase is 15 days old. So...maybe...

Chase had an appointment with his pediatrician today and he ordered x-rays. Although I don't have the official results, I did request a copy of the x-rays and had a radiologist friend read them. She's not used to reading pediatrics though so she's not willing to commit to a diagnosis. But it does look like the sutures are open. But that doesn't explain the ridging to me which seems to have gotten worse since we left the hospital. Plus I really can't feel the back soft spot. I'm probably just being quite paranoid but it's hard not to be. I guess we will know more as weeks go by.

Is it possible for the suture to close prematurely yet over the next several weeks?

[fitmomof2ae]

It could be partially fused. From what I've seen on this site, it's not uncommon for it to close during the first several months of life. Hopefully, it is just an overlap.

I was told that my son had a small soft spot at birth. At 9 months, he was diagnosed with Sagittal Synostosis.

How would you describe your son's head shape? Is his head starting to look narrow and long? Is the forehead bulging? Any other sagittal characteristics besides the ridge?

[Mamaof2]

Hello and welcome to Ck. I am sorry u have to deal with all this. Just wanted to let u know from my understanding and what the NS told us, xrays are not the best tOol for dx cranio as they are not conclusive. If u have any doubt, take him to see a neurosurgeon and put ur mind at ease with a definate answer. Hugs!

[Ryan's Mom]

Well results came back as "suspicious for craniosynostosis." Next step is a CT scan. Feels like deja vu. Talked with neurosurgeons office and they mentioned the posibility of it being just partially fused. Which would explain the head shape to me. Guess the CT will tell for sure.

[fitmomof2ae]

I'm sorry you are having to travel this path again.

[jjmc123]

So sorry. The bright side, it was caught early, however I wished you wouldn't have to go through this yet again.

[momof2withcranio]

Brenda,
Both of my boys were born with sagittal cranio. I was told that i would win the lottery or be struck by lightenting before both of my boyswould have it. Well I am still waiting for both. lol..
My boys are 22 months apart and doing well. I am finding more and more people with multiply kids with cranio. Wishing you the best of luck.

[Ryan's Mom]

Well CT scan confirmed what I knew in my heart all along. Chase has sagittal synostosis as well. Looks like we'll be doing this all over again. While in the waiting room I encountered a young boy dealing with cancer. My heart went out to him and his family. I'm counting my blessings that Chase was diagnosed early and that it is a treatable condition. Still my heart is sad and wishes he didn't have to go through this.

[Janet]

I'm so sorry honey, but you are right in saying that this is treatable. :hugg

[fitmomof2ae]

:heartbeat Sending hugs and support!

[Holly]

:huggBoth of my boys have sagittal cranio. The genetics doctor thinks its genetic but they didnt find anything in the blood tests.

[Mamaof2]

I am sorry u have to go through this again, but on the brighter side, u already know he is going to be just fine bc u have been through it. Hugs!

[andrews mommy]

I'm sorry you're having to deal with this again :( I assume it doesn't get easier, but it is good it's treatable. Hang in there and lean on us!

[Ryan's Mom]

Well surgery has been scheduled for July 14! Can't believe it's just around the corner!