What's wrong with his forehead?

Hi. We decided to start this blog for family and friends to catch up and be in the loop on Jack's treatment. Maybe there is someone out there that is also going through this and maybe this can help. Bryan and I will try to keep this updated as things progress.

We noticed that Jack's forehead was shaped funny right out of the womb. We talked about it the day after he was born and decided to ask our pediatrician, Dr. Lee about it. It really wasn't worrisome at this time. At his two week well check, the topic was brought up again. Our pediatrician thought that it was possible that plates in his head had fused prematurely and that he should see a specialist.

Jack at birth

Early the next morning, I received a phone call from the pediatrician, she had been thinking about Jack and decided that he needed to see a neurosurgeon right away. I took Jack that same afternoon to see Dr. Muhonen at Choc in Orange.

At first sight Dr. Muhonen told me that Jack would "need surgery but that was the worst news he was going to tell me." Jack had what is called

metopic craniosynostosis . 

 Reeling from this news - I sat calmly, listening to what was going to happen to my newborn baby. I saw pictures of a similar case and left feeling reassured that this (although major surgery and not routine) was going to be okay. We would have the surgery done at 3 months of age (this would be the end of September).

A month or so later we went to see a plastic surgeon that would be working with Dr. Muhonen - Dr. Jaffurs. Dr. Jaffurs let us know that the surgery would not be at 3 months, more like 4-5 months of age. He explained that Jack needed to grow and get bigger so that he could handle surgery better. Babies lose a lot of blood during surgery - usually half of their circulating blood... He let us know how the procedure would go:
The two doctors were going to make an incision ear-to-ear
They would cut out the fused area
Jack would be in the hospital for about a week
We would need to donate blood for him in case he needed blood transfusion(s)

We asked how common this was. It's a pretty rare birth defect, occurring double the amount in boys than girls and commonly to the first born male. The area where his plates are fused is the rarest of all types of craniosynostosis. There is little known about craniosynostosis, and why it occurs. It could be the way that the baby is positioned in the pelvis or sometimes it happens to twins.

We left feeling scared - but again, reassured that everything would be okay.

Jack's surgery is scheduled for October 21, 2013 at 7:30 am. We have all kinds of little appointments until then, pre-op, blood donation, blood screening, blood typing... Choc is going to be our new "home away from home."

A spacer will be inserted in surgery to separate the fused plates and we will be instructed to turn it everyday for the next 4-6 months or until his doctors are satisfied with the shape of his forehead. Once the shape is right, he will have a second surgery to remove the spacer.