cranialsentonisis?

Question

This is a problem with the brain and fusion of the head too soon in an infant. I have a 5 month old grandaughter who has this and I would like to know what to expect if she doesn't have surgery, and if she does have, what kind of quality of life can she expect to have?

Answer 1

My son is 13 months old right now. He was diagnosed with Craniosynostosis at 4 months old. He had metopic craniosynostosis where the sutures in the front of his head, running up his forhead fused prematurely.
It was his pediatrician who noticed it and referred us to a specialist. We live in CT and were referred to a 2 doctor team at Yale consisting of a pediatric craniofacial plastic surgeon and a pediatric neurosurgeon.
As far as what the prospect is if they do not have the surgery, I cannot tell you. To me it wasn't really presented to me as an option. I was too worried of the prospect of any lack of brain developement, or any of the many side effects as a result of the pressure, as well as the skull developing in a deformed way. If that makes any sense the way I worded it.
But, we decided to go ahead with the surgery. He was just a week shy of 6 months old. They performed a craniotomy where they removed the section of the skull which had fused.
It was a horrible time I must admit. The one thing to remember is that it is correctable.
Ethan is now 13 mos old and absolutely beautiful. You would never know that he ever had anything done at all. His face shape is wonderful, and his scar is completely covered now by his hair. Developementally he is also great. He started walking a few weeks before his 1st bday, is very happy and very interactive.
I could really go on and on.
When I found out about his diagnosis I did a lot of research online. It was scary for me, but in hindsight, was quite helpful to be prepared for what was to come. One sight that was helpful was craniokids.org. It is a forum of other families who's child has craniosynostosis and their stories.
Please don't hesitate to email me any time if you would like to know more about what we've been through and what he is like now. I would love to help you in this hard time.
Good luck and I hope this is of any help at all.

Answer 2

If the sutures of the skull close too early, the brain may not grow normally and the eye sockets may be deformed causing visual damage. In mild cases, the issue may only be cosmetic. If the brain cannot grow, obviously the quality of life will be seriously impaired. If she does have surgery, quality of life depends on whether the stenosis was detected early enough. Also, there are genetic syndromes associated with some cases of craniostenosis, and if present, will impact on the quality of life.

Your family sounds hesitant to submit the infant to surgery. This is understandable. Consider, however, the disaster that looms if surgery is withheld.