Craniosynostosis | Imamother

ftm1234

Thu, Oct 19 2023, 11:11 am

My baby is 6 weeks old and was just diagnosed today. She will need surgery to correct the problem.

Anyone had any such experience, or knows of someone who did?

Any info on the subject will be appreciated.

Thank you

amother

Phlox

Thu, Oct 19 2023, 1:56 pm

It’s fairly common, my child’s metopic suture closed too early, which one are you dealing with?
Sometimes surgery is a gray area, you need to do your own research and get second opinions to see if it’s really needed.

HappyMom5

Thu, Oct 19 2023, 4:17 pm

My son had it. I did a lot of research and ended up using Mark M. Souweidane, M.D at Cornell. I did the surgery that entailed only one small incision under kapul are and then he needed to wear a helmet till he was one. However thi specific surgery was only able to be done when he was young (I think about 6 weeks....)

ftm1234

Thu, Oct 19 2023, 7:45 pm

HappyMom5 wrote:

I was referred to a Dr at NYU. I'm hoping we won't have to do an open surgery.

amother

Linen

Thu, Oct 19 2023, 8:07 pm

amother Phlox wrote:

My child's metopic suture closed prematurely as well.

Op, can you elaborate? It's worth getting another opinion before doing surgery. It's a very gray area.

ftm1234

Thu, Oct 19 2023, 10:16 pm

amother Linen wrote:

My child's metopic suture closed prematurely as well.

Op, can you elaborate? It's worth getting another opinion before doing surgery. It's a very gray area.

My baby's anterior fontanelle is almost completely closed, that's what I know. Her pediatrician is supposed to be really good and he said that I should meet with a neurosurgeon sooner rather than later.

HappyMom5

Thu, Oct 19 2023, 10:47 pm

ftm1234 wrote:

I was referred to a Dr at NYU. I'm hoping we won't have to do an open surgery.

Was this Dr. Wisoff? Saw him too. Was very impressed with him too...