Our Son's Surgery

On April 23, Jonas is going to have a major surgery on his skull. He was born with a form of craniosynostosis called metopic synostosis with trigonocephaly. Stay with me! Your skull is made up of plates. Craniosynostosis is when one of the sutures fuses together early, which happens in about 1 out of 2000 births. Jonas's metopic suture closed early; that's the one that runs from your soft spot down the middle of your forehead. This form of craniosynostosis happens in about 1 out of 15,000 births, so it's not super common. Trigonocephaly means that because of this early fusion, his forehead has a triangular shape to it. Are you still with me?

Okay, so what's the problem with this? Well, obviously there's the physical appearance aspect. Nobody really wants a triangle-shaped forehead! But the main concern is brain growth. Jonas doesn't seem to have been affected yet, but we don't know what kind of intracranial pressure is going on inside his little head. Also, people who don't get this fixed tend to have problems in the future like bad headaches, developmental delays, etc. So we are opting to do the surgery on him.

The surgery is called a cranial vault reconstruction (CVR) with frontal orbital advancement (FOA). It'll involve a wavy line incision from ear to ear over the top of his head. They won't have to shave his hair, and once he heals, you won't even be able to see the scar unless he has a buzz cut. But it'll look pretty gnarly in the beginning. A neurosurgeon and plastic surgeon will reconstruct his little skull in about three hours, and he'll spend a few days in the hospital. The swelling will be bad at first (his eyes will even swell shut for a day or so), but he'll get better. He'll have to wear a protective helmet for six weeks afterward since he's a very active toddler. Then he'll go for checkups every now and then, but otherwise, he'll be a normal little boy!

We've been working with Denver Children's Hospital, and they've been amazing. They even answered our e-mails over Christmas when we were in Kyrgyzstan and found out Jonas had this condition. We had our consultation with the surgeons yesterday, and they are friendly and professional. The technology at that place is also pretty sweet! Jonas had some cool 3D photos taken for his "before" shots. We're happy that they were able to schedule us in for surgery so quickly, because normally children have this surgery done when they are less than a year old, so we wanted it done as soon as possible. Zack will also still be on adoption leave, so that will be super helpful as well.

I didn't really mention our son's condition beforehand or talk about it much with anyone until now, because I wanted to meet with the surgeons first and make sure we were going ahead with the procedure. I also didn't want to share this news before I was able to share pictures of our son, because I didn't want that to be the first thing people looked at when they saw him. But now that you've seen how cute he is, I'm not worried about everyone just looking at that. I also feel like I have a responsibility to teach others about this condition, because I had never heard of it and knew nothing about it at all. By the way, those adorable arched eyebrows of his that everyone loves? That's actually a symptom of his condition!

So yes, this is a pretty major surgery, and it's super scary that they're going to cut my son's skull open. But I guess I feel like we've been through so much already with just getting to the point where Jonas has joined our family, this just seems like another "bump in the road" to get past so we can move on with our lives. I probably won't feel so calm about it when I have to hand my baby over in the operating room though!

On the bright side, Jonas probably would have been adopted locally if he didn't have this condition, so we're thankful for it in a weird way. And we're lucky to have the resources and insurance coverage to be able to help him, because that never would have happened in Kyrgyzstan. Please keep Jonas (and us) in your thoughts and prayers on April 23!