My Experience with Scaphocephaly

My son, Gage, was born by urgent C-section due to very low amniotic fluid, slightly small size, and breech presentation. I was 36.5 weeks along, so he was just a tiny bit premature too.

We noticed early on that his head was somewhat oddly shaped, but didn't think much of it, since the doctors didn't seem to be concerned. We just figured that it was because it hadn't been reshaped by the birth canal.

This perception changed when Gage was about a month old. I took him to the doctor's office one evening because he had a very bad cold and had been vomiting. I didn't get to see my usual pediatrician, but the doctor we saw was very reassuring that he was all right in terms of the cold; however, she was concerned about the size and shape of his head and told me to take him for an x-ray the following morning. She didn't tell me why, but I overheard her talking to another doctor who was there at the time and caught the word "scaphocephalus."

Since I am a medical transcriptionist, the word was fairly easy to remember, even though it was unfamiliar. I don't do pediatric transcriptions. I went home and typed "scaphocephalus" into Google. No clear results... most of them were in foreign languages.

I called in my older sister for help, as she has been doing medical transcription even longer than I have. She didn't know the word either, but started looking on some resources she had access to that I did not. Finally she came up with craniosynostosis and scaphocephaly and things started making sense.

Scaphocephaly is a form of craniosynostosis where the saggital suture fuses early in the baby's skull, causing the skull to grow long and narrow. Gage's head, I was quick to notice, looked exactly like the pictures we found online.

We took Gage in for x-rays the following morning, then visited my in-laws for the rest of the day. We really should have gone home sooner. When we arrived home, there was a message waiting on the answering machine. If we could go pick up the x-rays before the clinic closed (in about 15 minutes), we could have a consultation with a pediatric neurosurgeon first thing the following morning. One problem: the clinic was at least a half hour drive away.

Obviously, we didn't get that appointment. But I went in first thing to get those x-rays the next day, and called the doctor as early as possible to see about getting a new appointment. It took a while, but then they said we could either have an appointment two days later, or we could go right in and get one that same day. Naturally, we went straight in.

The pediatric neurosurgeon took a look at the x-rays and did indeed feel that Gage's saggital suture had fused already, but needed to refer us for a 3-D CT scan to confirm the diagnosis. He said if it confirmed the diagnosis, and he expects it to, then he would want to schedule the surgery when Gage was a little older, say 2-3 months old. Not too old, as he is one of the few doctors in the nation who does a minimally invasive surgery for this condition, but that surgery requires a very young baby. Six months is too old.


Copyright © 2003-2019 Stephanie Foster unless otherwise indicated


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