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My 4-month-old needed skull surgery. He was born without a soft spot.

Jul 26, 2023, 01:19 IST
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The author holding her baby after surgery.Courtesy of Renae Gregoire
  • Craniosynostosis is a birth defect that affects one in every 2,500 live births.
  • A newborn with the condition has a misshapen skull because one or more sutures closed too soon.
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I'll never forget the day I handed my tiny son over to a nurse for what I knew would be a major surgery.

Although our kind neurosurgeon assured us he'd be doing "carpentry" rather than "electrical" work, I was still frightened for my little boy. I was afraid he'd be in pain, and I wouldn't know how to soothe him. I worried that something might go wrong.

Although I tried to be strong, tears leaked from my eyes. "We'll take good care of him," the nurse promised, her eyes full of compassion. I handed my son over and clung to my husband. We watched the nurse disappear behind the double doors leading into the surgical center.

My son was having skull surgery for sagittal craniosynostosis, a scary-sounding mouthful that breaks down like this: Sagittal for the particular soft spot my son was missing, cranio related to the cranium, syn for without, ost for bone, and osis for condition.

His pediatrician noticed something wrong with his soft spot

Even though we didn't realize it, our first clue that something was wrong came during our son's 2-month pediatrician visit.

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She measured his head and felt around his skull, telling us she wanted to take notes to compare when we came in for his 3-month visit. "There may be something going on with your son's soft spot," she said. "It's nothing to worry about at this point. Let's wait until our visit next month." Trusting, we went on our merry way.

The pediatrician measured his head again and then turned him sideways. "See how his head is shaped like a football?" she said. "That's because he's missing a soft spot, here, on the top of his head, so his brain can't grow upwards. Instead, it's growing out, side to side."

We still weren't entirely concerned at this point. "It's really easy to correct," the pediatrician said, telling us that our child may need to wear a helmet for a while. "I'll send you to a specialist who will spell out your options." Again, trusting, we went our merry way. After all, wearing a helmet isn't the end of the world.

We were sent to a neurosurgeon

Fortunately, the surgeon's office got us in quickly. During our meeting with the neurosurgeon, we learned that my son had sagittal craniosynostosis. He didn't need brain surgery, but he did need skull surgery, with a cut from ear to ear, as soon as possible.

In normal conditions, a newborn's skull has five bones, all connected by fibrous materials called sutures. These sutures, or soft spots, make it easier for the skull to squeeze through the birth canal and allow a baby's skull to grow with its brain.

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Sometimes, due to genetics, the environment, or, in most cases, unknown causes, a baby is born without one or more soft spots. Then, as the brain grows, the skull becomes misshaped.

His surgery lasted 2 hours

I was shocked to see him after surgery. A drain was coming from his head, and you could still see the orange betadine used to prevent infection. He looked so small and helpless; my heart broke. I was so happy to be able to hold him, though.

The nurses and our surgeon told us repeatedly that the surgery would be harder on us than it would be on him. They were right.

It wasn't long before he was eating like a champ again. And he was discharged from the hospital on the third day after surgery.

His bandage came off soon after. He never really seemed to be in pain, but we kept up a preventative regimen of acetaminophen every four hours for the first three days at home.

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The surgery — which our surgeon said was his favorite to perform because the outcomes are so good — was a success.

Today, our son is a young adult. You can see the scar on the sides of his head if you look closely.

His head is also a little lumpy and bumpy, but as our surgeon said, the only one who'll ever know will be his girlfriend when she runs her fingers through his hair.

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