Thursday, December 17, 2009

Craniosynostosis

I think I mentioned before that we have been concerned about Micah's skull. Back in October, DH noticed that Micah had a "bump" on his head. I felt it, and quickly realized it wasn't just a bump. One of my best friends' child had a problem with her skull - it fused too early, and she required major brain/skull surgery to fix the problem. I remembered her describing the issue as a ridge on her forehead, and the minute I felt Micah's bump, I *knew* it was a ridge. I did a bit of research online, and I quickly realized that there are different "sutures" (spaces) on the skull that can fuse too early, and Micah's ridge was along the metopic suture (it runs from the nose vertically back to the softspot). DH & I decided to wait a bit and talk to the pediatrician at our next appointment.

Our next appointment came up in November - I think it was a sick visit for Micah (we've had so many the past few months)! We showed the doctor the ridge, and he said we did not need to worry about it unless his head "started to look really deformed." Immediately, warning bells went off in my head. I knew from talking to my friend that even mild craniosynostosis can cause swelling and pressure in the brain and can result in developmental problems. So, I decided to take matters into my own hands.

I immediately started researching specialists in this area, and tried to call and make an appointment. Not so easy to do! We were given the run around at the hospital, and it was incredibly frustrating. I called my friend and asked for her advice. She immediately put me in touch with her doctor's office just before Thanksgiving.

I called up to the cranio-facial specialist in New York, but waited almost 2 weeks before I heard back. I was getting very anxious and frustrated. When they called back, they asked me to send photos of Micah's head, and told me to make an appointment with a pediatric ophthalmologist to check his intracranial pressure and eye sockets. I found a pediatric ophthalmologist and made the appointment, but I still heard nothing from the specialist in New York. I asked around and spoke to a few other friends, and they gave me the direct email of the head cranio-facial team in charge of pediatrics in our area. I sent him an email, and he immediately responded and told me to come in for an appointment.

On December 11, we had our appointment with the ophthalmologist. They dilated Micah's eyes, and did a funduscopic exam. We learned that there was no obvious intracranial pressure (great news) but that Micah's eyes are very close together (although within the range of normal), and he has a fairly big difference in the vision between his right and left eyes. We will have to bring him in for more follow-up in 6 months, and regularly for the next few years.

On December 17, we had our appointment with the cranio-facial specialist. He did an initial exam and told us that Micah definitely has a ridge. He said that while craniosynostosis can only be formally diagnosed by CT scan, he felt that it was fairly obvious that Micah has it, but a mild case. He felt that Micah's skull had fused a bit early, but late enough that it should not cause any real problems, just "cosmetic" issues. He said that the ridge was fairly small and Micah showed no other signs of developmental delays or other skull deformities. He suggested that we did not need to put Micah through additional testing, but we should come back again in 6 months if things worsen, and sooner if Micah exhibits any developmental problems (such as not walking by 15 months).

Along this journey, we noticed that my niece also has a ridge on her head, but she has no developmental delays or other skull issues. While discussing this with the doctor, he said it puts Twoey at an increased risk for having this issue, so he suggested that we might want to bring Twoey in for an evaluation visit around the 6 month mark.

I can't even tell you the relief we have - we are so thrilled that we do not have to put Micah through surgery! I've been so worried for the past two months, that this news really was an incredible relief for us. Now, if I can just convince DH to stop telling everyone that Micah is part Klingon, I'd be thrilled!

So ... just a touch of advice for new parents - watch your children's skulls. Apparently, this is NOT an uncommon problem, and it can be far more severe. If you feel ridges developing on their skulls, or think their heads appear misshapen or if you think there are developmental delays, PLEASE don't be afraid to seek out a pediatric specialist - pediatricians tend to wait until the problem is really bad/obvious so as not to be alarmists. Micah is still at fairly high risk for some vision issues, and his intracranial pressure will need to be monitored a couple times every year until he is at least two years old. Small price to pay to be sure the problem is really benign.

3 comments:

Mandy said...

How scary! I am so glad that you got good (well, better than the alternative) news!

Prather Family said...

I'm glad you listened to your mommy intuition and looked into the matter more. I will be looking at the girls' skulls more closely.

I hope things develop fine with Micah in the future.

Jules said...

Glad to hear it sounds like a milder case and that they'll check out Twoey also (love the nick!)