Craniosynostosis

The day before her surgery

Monday Nov 7th we took Kenna to her pediatrician for her two month check up, shots, etc.... As the Dr. was examining her, he realized that he couldn't really find her soft spot, so he started feeling around her head and then taking note of her head shape. He told us that he thought she might have some indicators of a certain birth defect, but not to worry, he would just check her again at her four month appt. After a couple of min he decided that he didn't feel comfortable waiting and had another Dr come in to double check what he had found. The other Dr. confirmed that she had signs of this birth defect and they sent us straight over to the hospital for X-rays. He called us back within an hour of the X-rays to tell us the bad news...all of the bones in her skull had fused prematurely, not giving her brain enough room to grow normally.
The next morning we were at Primary Childrens Hospital in Salt Lake meeting with a plastic surgeon and a neurosurgeon and discussing options for surgery. It all happened so fast that Jimmy and I were kind of reeling from it all. But, when they talked about the second option for a newer surgery we both felt peaceful about choosing that one.
Our first choice was to completely take apart her skull and reconstruct it with plates and screws, which results in a much harder surgery on the baby's body and a harder recovery. The benifit is that its only one surgery and once they heal there is no more treatments to be done, and the birth defect is corrected.
The second option is the one we chose. It is less invasive then the first surgery, but it means more treatment after the surgery. It is a newer surgery where they actually remove the top portion of her skull, giving her brain room to expand and alleviating the chance of more deformities developing in her head or face. It was scary to choose this one on two levels...first of all, agreeing to doctors removing a third of your babies skull is not an easy choice to make. And secondly, being a brand new surgery..there are no long-term effects to study. The idea is that if this surgery is done early, ( before three months of age) the portion of removed bone will have time to grow back by the time she is six and her bones stop regenerating as fast. She will wear a helmet for the first year after the surgery for two reasons: to protect her head and also to shape the new bone as it grows in.

The day of the surgery was scheduled for five days after the diagnosis and I think I cried more during those five days then in my entire life combined. The day of the surgery was hard. Handing her over and walking away from her was the hardest part. Thank heavens she is so young and didn't have a clue what was going on.
Her surgery was scheduled to take 2.5 hours and it ended up taking 4.5. So you can imagine how stressful it was sitting in the waiting room during that time. Nothing I ever want to do again! She came through surgery fine. When we first saw her she was pale and swollen. Over the next few days she was in so much pain. I think that was the hardest part of the entire thing. We could hardly bear to see our little angel in pain and not be able to fix it.
As I write this, it has been six days since her surgery and she is getting better every day. She isn't all the way back to her smilely self just yet, but i'm sure in a few more days she will be!This is in the infant ICU while she recovered.


Her Daddy didn't leave her side


This is about two hours after the operation


Going home! Poor baby was so bruised and swollen :-(