Just found out 7 month old has partial fusing of sagittal suture

[William's Mom]

Hi
My son had an xray which showed partial fusing of sagittal suture. We've been referred to a neurosurgeon. Everything I've researched says that the skull becomes elongated, but my son's skull doesn't look elongated. What he does have is a bump at the base of his skull in the back of his head. Sort of where his skull meets his neck. I see it on both the right and left, but the ped was only concerned with the left side.

Does anyone know of similar cases of partial fusing where the head does not appear elongated?

Any information anyone can offer is appreciated!! I'm still in shock. I don't think things will really sink in until we see the neurosurgeon.

Thanks
Kiki

[Mgbianco]

Hello William's Mom! My son was diagnosed at 1 week old with sagittal synostosis. He also had a bump at the back of the head. I see that you are from Ontario. My son had his surgery at Sick Kids in TO at 4 1/2 months. He is now 2 years old and is doing very well. When is your appt with the neurosurgeon ?
If you have any questions please feel free to ask, you can also private message me as well.

Mary

[William's Mom]

Hi Mary thanks for your reply!
We don't have an appointment yet. I'm hoping to hear next week. The ped was going to refer us to Mcmaster but I asked for sick kids (have heard such wonderful things about the team there).

I'm sure I will have lots of questions as we move forward with this. Thanks so much!
Did your son have the elongated head shape at all? Your kids are adorable by the way!

[Mgbianco]

Hi William's Mom,
Thanks for the compliments!
Hope you get some answers this week. I remembered the waiting period of just getting an appointment with the neurosurgeon. Its the scaries feeling however the day that you meet the surgeron is even more surreal 'cause they will in most cases comfirm what you know or think you know by a bedside assessment. He just felt my son head and confirmed. We later had a xray and ultrasound to confirm and at the second meeting with the neurosurgeon we were left with a very difficult decision. With our case the surgeon left the decision with us, I almost would have preferred they saying you have to have this surgery instead of saying that its "cosmetic". We did decide to go ahead with the surgery for the benifits of our sons future. We had a great experience with sick kids. I unfortuately do not have any experience with McMasters. I am sure its also a great hospital.
The shape of my sons head was very typical of a sagittal shape - his forehead protruded with very pronounce "bossing" on the side of his forehead, elongated head with the bump at the back. It was strange that some days it was more obvious then other days.
I hope you hear back from the hospitals soon.

Please keep us posted.