Crainiosynostosis Aka Fused Skull

My friend's baby had the plates of his head fuse too early. Around 6 months they performed a craniotomy removing part of the skull so that it could reform in the correct shape. He had to wear a helmet to protect and shape his head for a time afterward.

The outcome was perfect. Baby is a couple years old now and totally fine. The scars are hidden under his hair.

I don't know about the diagnosis, but they were onto it in my friend's son's case from very early on. They waited for the surgery because they wanted him to be a little bigger to tolerate it better.

My son was diagnosed with craniosynostosis at 2.5 months and underwent surgery at 5 months of age. His metopic suture was fused but his surgery was optional as closure of the metopic suture does not inhibit brain growth...however, if he did not have the surgery we were told that he would be very disfigured. Our neurosurgeon was excellent. He was in the hospital for 3.5 days and did need a blood transfusion...my husband donated ahead of time. According to our surgeon, an apendectomy is far more dangerous than this surgery. It looked very bad because of the incision and swelling, but our son was happy and playing just fine. He is 3 now, and perfectly fine...ahead developementally.

Im sorry I have not heard of it, but I would assume the condition prevents brain growth. So early treatment should be in order. Is your doctor not educated about it?, then I'd find one that is. I hope you find the info you are looking for.

My girlfriend's daughter was diagnosed and had the surgery with no ill effects. Interestingly, both she and her husband were both in the medical field and both in pediactrics and niether of them diagnosed the problem. To them, she was perfect, but another professional noticed immediately. The procedure is not a new one and is necessary. Good luck.

There are several different types of craniosynostosis, so the diagnosis is very important because treatments are very different.

My son was diagnosed with right coronal cranio at 9 months of age. His pediatrician noticed the abnormal skull at 7.5 months, we then made an appointment with a neurosurgeon (which took 6 weeks). When the neurosurgeon met us, he immediately daignosed my son - but we had to get a CT scan to confirm diagnosis. The CT sucked b/c he didn't understand why he wasn't allowed to eat (he had to be put to sleep).

At 10 months he underwent a bilateral frontal orbital relocation -- which is really a very fancy name for a drastic surgery where the front portion of his skull was removed, reshaped, and reattached. We were in the hospital for 5 days, his eyes were swollen for 4 of them (which was the WORST part for him). As soon as his eyes began opening, he was back to being who he'd always been -- a fun loving, developmentally appropriate child. He has never had to wear a helmet to help form his skull, but I know some children do.

Please feel free to e-mail me at ____@____.com if you want to chat more/privately.

My sisters best friend had a baby with it. I know they first tried to correct it using some kind of a special helmet. In the end he had surgery and has since recovered. He is now in grade school. I will get in contact with her and try to get more details for you. L.

My understanding is that it often requires surgical intervention to allow the baby's head to continue growing appropriately. Have you been referred to a craniofacial specialist? My best suggestion is to talk to your pediatrician...the best person locally (unless there's someone at Childrens) is Ben Carson at Hopkins (Baltimore)

Good luck,

C

My cousin has two children who both had/have this. Both little boys at the time of their diagnosis (I want to say they were 3 & 5 at the time.) They each had misshapen heads and were very slow to hit their developmental milestones. Very poor language and very hard to understand. The youngest hated being held and was always arching his back to be put down and by the time he was 2 could only say "green bean." It took my cousin a good year of doctors appt's and referrals to get the final diagnosis and then to find a specialist. I believe one of the best is Dr. Ben Carson up at John's Hopkins. My cousin was in poor financial distress at the time and Dr. Carson actually did the surgeries pro bono. The surgery was an absolute success for the oldest and he showed signs of improvement immediately. Much slower progress for the younger child and he actually had to have the surgery again to re-lift his forehead.

The boys are both in their teens now and are doing well considering there difficult start in life!

A friend's son was diagnosed at about 6 months and was able to have surgery within the next two months (Ben Carson did the surgery). His surgery and recovery went very well and now, four years later, you would never know that anything had ever happened. However, since this condition will impact the growth of the brain if left untreated, do get your child the best help you can as soon as possible. I wish you the best.

Yes. There is a wonderful plastic surgeon by the name of Dr. Dufresne who is medical director of the Inova Fairfax hospital Craniofacial Program. He runs a "head clinic" at Fairfax Hospital in Falls Church, va. I believe there are 3 doctors who do this clinic and they are all very good. The contact # for the clinic is ###-###-####. The doctors volunteer their time to see patients at the clinic and your insurance is charged a nominal amount to cover a copay but i would ask. I personally used this clinic for another craniofacial issue and thought it was wonderful.
My understanding is that if the baby's skull has fused he will need surgical intervention then wear a helmet for 6 mos to a year to protect his head and make sure it heals into a nice round shape. the sooner you see someone the better as it does inhibit brain growth if not treated. Results are excellent. good luck.