Craniosynostosis

Craniosynostosis (cray-nee-o-sin-o-stow-sis)

The premature fusion of an infant’s skull… or as I like to call it the cutest baby syndrome. We all think our kids are the cutest but mine serious is the cutest!

Ever since he was born we always joked that he looked like a little ole grumpy man. We never thought that little ole grumpy man look would actually cause us some really grumpy moods. At 4 months old our pediatrician asked us a surprising questions, “Does anyone else in your family have a pronounced forehead like his?” My husband and I looked at each other like what is she talking about? We said no and the next thing I know we are walking out of the pediatrician with another referral. At this point we had been referred to so many specialist my head was spinning. I went immediately to the hospital for the X-ray and couldn’t wait to get the results back. I was freaking out.

“Good news, the scan was normal!” whew I had googled it and spread the word everywhere for people to pray against this. My son was not going to have cranio-whatever it was called!!

Two months passed and we went to our next routine check up for 6 months. The doctor mentioned maybe a helmet would fix is “pronounced” forehead. I was cool with a helmet. A helmet is better then a skull reconstructive surgery. So we made the appointment.

Then the doctor called a few days later. She said should just couldn’t shake the feeling that Ezra should see the neurosurgeon just to make sure it wasn’t cranio-wahtever it was called. Now I was worried. I thought we already determined it wasn’t? I thought the x-ray was normal?

We went to cranial technologies and had Ezra screened for plagiocephley to determine if a helmet would help. The nurse came in after taking 3D images of his head and put the photos on the screen of Ezra’s head next to a normal head. Then said it wasn’t plagiocephaly and she didn’t recommend helmet therapy. She agreed we needed to see a neurosurgeon. At that point I knew, my son was a cranio baby and I couldn’t escape it any longer. I mean I’d seen the photos online and done my research and it was pretty obvious he had it. So I learned how to say it, and spell it, and sent out massive prayer requests to everyone I knew.

scan photos

We saw the neurosurgeon several days later and Ezra was officially diagnosed as Metopic Craniosynostosis. The metopic suture has prematurely closed causing a ridgeline on his forehead and a triangular shaped head. My little ole grumpy man was actually facing a serious diagnosis and potentially major surgery.

We since have done hours and hours of research on the surgical procedure to fix it. It’s horrible, I promise. No mom ever wants to hear a surgeon say they want to remove pieces of your baby’s skull, reshape it and reassemble it with screws. We have spoken with several doctors across the country and are flying to see world renowned doctors at Boston Children’s hospital next week for a surgical consult. We have asked our team of doctors at Nicklaus Children’s so many questions the Plastic Surgeon told me I probably know more about this then his medical students do. We are hoping now that our consult with Boston will confirm that we are making the right decision moving forward with surgery.

Our son is scheduled for surgery in December with Nicklaus Children’s Hospital in Miami, FL and as that date gets closer we are fervently seeking God for peace, direction and healing.

There are so many things about this that causes us nervousness and stress. The financial aspect of this surgery, the pain our precious little boy will endure, the risks given the nature of the procedure, the unknown of how he will respond to surgery, the healing time and so much more. We are praying for our miracle. We believe that our God is a God of miracles and that no matter what Jesus will heal our son. My pastors said something very wise to us in this season… she said that sometimes miracles happen in minutes and sometimes miracles happen in series. We may be on the series plan with him but I am confident that one day craniosynostosis will be a thing of the past for us, a distant memory that we look back on and remember how faithful our God was to us.

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