Rare skull disease afflicts child

Chris wrote:

My son had this surgery over 26 years ago at the Children's Hospital in Denver by an amazing neurosurgeon--Dr. Robert Hendee Jr.

Just came across this post while doing a Google search for Dr. Robert Hendee Jr. I'm wondering where he is now. My son was diagnosed with craniosynostosis in 1986. Dr. Hendee saved his life when he performed the surgery at that time. My son is now 23 years old and just graduated from college. He was a college football player and played sports his whole life. He was always a good student. This is all because of the amazing work of Dr. Hendee and the staff at Children's Hospital in Denver. I just wish Dr. Hendee could know my son's suceess story! We are so grateful to him! For others who are just now going through this, there is a rainbow on the other side. Stay strong and know that your child has every chance to be normal and live a healthy active life after this surgery.

Chris wrote:

My son had this surgery over 26 years ago at the Children's Hospital in Denver by an amazing neurosurgeon--Dr. Robert Hendee Jr.

Dr. Hendee operated on my son as well, 26 years ago, at Denver Children's. He was an amazing neurosurgeon and a kind and compassionate man, totally dedicated to the children he served. Re: the article...My health insurance at the time claimed the surgery was "experimental" and refused to cover it; we tried to hang on but ended up filing a Chapter 7. My son had three craniofacial reconstructions secondary to involvement of the coronals and lambdoidals; one at 22 weeks, one at 44 weeks, and one at 3.5 years. I am an Occupational Therapist and back then there was NOTHING to support parents going through this nightmare; I had never even heard of this condition and at the time the stat was 1 in 10,000 live births. But stats loose all meaning when you are the person who has had the "one". Now there are websites (CAPPS), support groups, etc. I kept my son in a Bell Shell (helmet) until he was three and a half, then took it off and held my breath. Today, at 26, he has migraine, but so do I and so does my daughter and so does every one else on my mother's side of the family, so who's to say if the cranio had anything to do with that? My thoughts and prayers are with anyone who is going through this.

I just came across this website and I was reading your story about Axl, although this is 2011 I hope everything well. My son will be 30 years old next Monday and he had his first surgery October 1981 at Denver Children's Hospital by Dr. Robert Hendee. My son was the second reported case and he is doing great except for migraines. I hope all went well for you and your son.