Q for bicoronal moms/dads

[Kari]

Lily was dx with bicoronal. Her surgery is April 11. She's 10weeks now, will be 4 mo at time of surgery.

I had some questions. (And will have many more I'm sure)
When were your sweeties dx with cranio? How old were they when they had surgery? What kind of surgery? How long did it take? Did they have to have more than one? Is your child's cranio assoc. w/ a syndrome?
Do they have any problems with vision, hearing or development?

thanks!!!

[craniomommynbaby]

Feel free to check out the link to our page in my siggy. It has a journal to help you see what all we have been through.
Now, we are definitely a case with some syndrome. The cranio has appeared in several people in my family. We just have not finished the testing to see if there is a name for it. Since we knew of the genetic risk, we had Level 2 ultrasounds done throughout the pregnancy. It did not show up on those, but the sutures were fused at birth. In fact, I ended up with a c-section because he would not come out and the obstetrician could not find palpable sutures to warrant a vacuum extraction.
A nurse doing the PKU test first commented on the shape of his head, and other doctors confirmed. Within the first month of Simon's life, we were on a whirlwind of appointments. They did the surgery at 6 months old at Arnold Palmer Hospital for Children. He had a cranial vault remodeling (CVR) with frontal orbital advancement (FOA).
His vision has been fine in both eyes. (One of the good things about bicoronal is that the misshaping is symmetric and easier to deal with cosmetically.) He did have physical and occupational therapy due to hypotonia (low muscle tone) and developmental delays, but he is completely caught up with his motor skills. He is now getting some speech services due to a delay, probably caused by fluid in his ears. He had ear tubes put in the day before Thanksgiving.
I think that answers your questions in a nutshell. Again, feel free to check out our site, and I would be glad to answer any more questions you have.

[mom2mykidos3]

My daughter Miriam was 2 months old when she was dx. After 4 weeks of trying to convince the doctors that something was wrong. I finally just went to our Pediatrian and said you will write a referral to the children's hospital for us.
She was 6 months old when they did the surgery. That made for a long 4 months of waiting. That was the worse part.
Our PS did the cranial vault reconstruction and Frontal orbital advancement. Which is the most traditional way of surgery for CS. It took about 5 hours. Again the waiting killed me. Everytime the phone rang in the waiting room I would jump.
We do think that Miriam will need a touch up surgery for the forehead. Her eyes look really good though. My PS overcorrects the eye effected because in studies it showed that coronal cases tended to try to revert back. They are going to try and fix her head shape with a helmet. I am currently fighting with the insurance company to get them to cover it.
She did need an eye surgery to repair the eye muscles that were strained due to the CS. I think she will need another one sometime this year. I also think she will have glasses.
Miriam is a little bit behind in her development. She isn't crawling yet. She kind of does the army crawl. At her 12 month appointment we will probably get her into early intervention.
I hope not to discourage you. Miriam is a wonderful little girl and very strong. She did amazing with the surgery. I hope I have helped.

[Malcolm]

Our son has bicoronal and was dx at 26 weeks (perinatal) via ultrasound, so I think we are a distinct minority in that resect. Callum had his surgery at 5 months and it last around 6 hours. He had the typical CVR/FOA. His sugery went great, however there is always the possibility of a second surgery. Especially with bicoronal.

His hearing and sight are normal. His development so far is right on schedule. He is 8 months and trying to walk already.

Callum has Muenke syndrome which is highly variable as far as other issues. From our research and discussion with our geneticist Muenke occurs in roughly 30% of coronal fusion (unilateral or bilateral) and is often misdiagnosed.

Feel free to ask any questions.