Long scary medical words about my baby’s head

Metopic craniosynostosis.

The infant skull is made up of multiple pieces, allowing the head to be squashed a bit during birth and then accommodating rapid brain growth over the first few years.  As a child grows, the fontanelles (soft spots) close, and the suture joints between the skull pieces begin to harden.  The first suture to close is the metopic suture, running down the forehead between the frontal bones.

Sometimes one or more of the skull sutures fuse too early, before birth.  This is called craniosynostosis, and this is what happened to Younger Brother.

Looking back at his newborn pictures, we can see the bony ridge running down the center of his forehead, the sign of a prematurely fused metopic suture.  Nobody thought anything of it at the time; after all, newborn heads are often somewhat misshapen.  He also had a big—and completely normal—purple bruise at his hairline from a long time spent crowning in the posterior position.  The bruise faded within about a week.  The forehead ridge didn’t go away.

For a while, I figured it was just a funny quirk of his appearance.  With fine, patchy hair and a lingering birthmark on his eyelid, Younger Brother is adorably goofy-looking in the way that only babies can be.  His behavior and motor skills have progressed normally, and his head circumference at his two-month checkup was right on target.

Eventually, though, we started to get a bit concerned.  The ridge remained prominent, and his forehead took on a distinctly pointed appearance when viewed from above.  (Metopic craniosynostosis is also known as trigonocephaly, or “triangle head.”)  We decided to ask about it at his four-month appointment.

“Wow,” announced our pediatrician.  “I’ve never seen this before in 30 years of practice!”  Gee, thanks.

Fortunately, though, the doctor knew what it was.  He’d seen craniosynostosis of other sutures, just not the metopic, and he knew the plastic surgeon in town who could treat it.

Left untreated, Younger Brother’s condition could constrain future brain growth and lead to developmental problems.  In 10–15% of cases, the surgeon told me, untreated craniosynostosis produces measurably increased pressure on the brain, which is very bad.  So this isn’t a watch-and-wait kind of situation.  It won’t resolve on its own.

My baby needs surgery.  And not just any surgery—they literally have to remove his forehead, reshape the bones, and reattach them so as to allow his skull to grow properly in the future.  The rate of complications is very low, especially in children that are otherwise healthy, but it sure does sound scary.

Now that we’ve had his diagnosis confirmed, I’m of many different minds about it.  Part of me is optimistically stoic.  It’ll all be OK, just stay strong, get us through this, he’ll be fine.  Part of me is pretty freaked out, especially after learning how swollen he’ll be in the hospital after the surgery.  He won’t even be able to open his eyes for a few days.  Poor kid, he will be so sad and scared!  He won’t know what’s going on.  What if he’s never the same?  And part of me—especially in the middle of the night—is worried that we’re all just overreacting.  What if it turns out he doesn’t need surgery and you’ve told everyone for no reason?

All the parts of me want to give my baby extra love and hugs and songs and snuggles.  I stroke his funny head and imagine what we’ll tell him about it when he’s old enough to understand.  We haven’t told his brother about it yet; we’ll wait until the surgery is scheduled and then give an overview appropriate for a three-year-old.  Little Boy had his adenoids removed last week, so he has some personal experience with the concept of hospitals and operations, and won’t, I think, be overly upset.

A weird little part of me is glad that I didn’t put more effort into job-searching in the fall.  If I had, we might’ve already moved and be dealing with new doctors, new health insurance, and complicated schedules with limited time off.  As it is, we’re here in a place that we know, with reasonably good insurance, and I have all the time I need to take my baby to his appointments.  Sometimes, things work out the way they need to.

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7 thoughts on “Long scary medical words about my baby’s head

    • It wasn’t noticed at the 2-month appointment. Younger Brother also developed a typical flat spot on the back of his head from sleeping on his back, and our ped did pick up on that and give us the usual spiel about tummy time, etc. But nothing about his forehead. You don’t see what you’re not looking for, I guess.

      (While this was obviously an oversight, I’m not upset about it. The surgeon here likes to do the operation at around 6 months of age, so there was no harm done by not picking it up earlier.)

      Like

  1. Praying for strength for you and for the surgeon’s hands and special prayers for your sweet baby. Cohen is undergoing his second cranial-surgery, as his soft spots have closed up again. Cohen had his first cranial surgery a year ago, but his sutures closed again. He will have another cranial surgery in just a couple of weeks.

    Liked by 1 person

  2. Pingback: T minus 6 days and counting | crazy mama, PhD

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