Liam's Bicoronal Synostosis Journey

[Liam's mom]

Liam was born December 19, 2007. After 3 hours of pushing, I had an emergency c-section since the baby would not drop into the birth canal. Needless to say, Liam was born with, what we thought was, a big bump on his forehead due to being pushed into the pelvic bone for so long. At his 2 week check-up, the pediatrician noticed that the bump hadn't gone away, so he sent us to St Louis Children's Hospital to see a specialist. On February 6, we met a geneticist who told us Liam had a few symptoms of Saethre-Chotzen Syndrome. A week later, we met with the plastic surgeon, who diagnosed Liam with Bicoronal Synostosis. He also told us he didn't want to classify Liam in a syndrome because there were very few symptoms. So, goodbye, geneticist. We set a surgery date as soon as possible, March 13, to take advantage of this new endoscopic surgery. In the mean time, we had to take several trips to St Louis where we met with a child psychologist, eye doctor, and the pediatric neurosurgeon. We were lucky to have such a great team, they were all so nice and helpful.

Liam was 3 months old when he had surgery. I cried when the anesthesiologist took him away. One night in the hospital and we were home the next day. It's amazing how quickly these little ones bounce back. He was smiling and laughing 2 HOURS after surgery. The following Monday (March 17), Liam was scanned for his shaping helmet, which he got 1 week later.

So, here we are, Liam is almost 10 months old and he adjusted wonderfully to his helmet. He's even figured out how to take it off, which has been a challenge for mom and dad. We are hoping that after 1 year of helmet therapy, Liam will be done for good. Time will tell.....

[dannlark]

Thanks for posting your story!! Sounds like you guys went full throttle getting help for your cutie!! That's the way to do it if you can...lucky you! Have you seen much of a change yet in his head shape?

[Lisa]

Welcome! It sounds like you were on top of getting things done for your little guy! My son was also bi-coronal and is about the same age as yours! We have one more small surgery and we are done! Great to have you and look forward to getting to know you.

[AuburnLocks]

Oh my goodness...he can take it off! You have a very smart kid on your hands.

What a cutie. Welcome.