Craniosynostosis: New Skull, Same Brave Boy

“They Gave Him the Head of an Eight-Year-Old”: Navigating Cranioplasty and Courage

**WARNING: There are pictures of Elias post-surgery in this post**

Two weeks before my 35th birthday, our family braced for something far more significant than cake and candles. Elias, our bright, brave little boy, was admitted to hospital for a cranioplasty — a complex surgery to reshape his skull.

We’d known this moment might come. The sutures at the back of his skull had fused prematurely, a condition known as lambdoid craniosynostosis, which meant his skull couldn’t expand fast enough to accommodate the natural growth of his brain. Since diagnosis, he’d had six-monthly CT scans to check for signs of rising intracranial pressure, and even spent 48 hours hooked up to a monitor to track any spikes overnight. Eventually, the decision was made: it was time to operate.

Apparently, your skull stops growing at around eight years old. So Elias was, quite literally, given the head of an eight-year-old to prepare him for his future. The surgeon was very delicate as he explained (full of surgeon-pride) that he'd given our son a "normal" shaped skull. Did I get a little upset by this? Naturally. Did I know he only meant well? Kinda.

While technically not brain surgery, it came painfully close. The consent forms alone were enough to turn your stomach — pages and pages of hypotheticals, complications, and cold clinical language. Signing them felt like saying: Yes, I’m okay with you possibly causing irreversible damage to my child. Thank you very much.

The surgery itself went well (so I'm told), though there was an unexplained delay that sent me spiralling into full panic mode. Waiting, not knowing — it’s unbearable, I sat outside Koala Ward unashamedly crying. But eventually, he was out, and he looked… different. The surgery is technically classified as plastic surgery, and you could see why. His forehead, which had always protruded ever so slightly, had been carefully reshaped. It was still Elias, but altered.

At first, he seemed fine. He was eating with gusto, and we had to track bowel movements like a newborn. We were moved to a private room with an actual bed for me! Then, his eyes began to swell shut — a normal response to this type of surgery, the doctors assured us. But imagine being deaf, as Elias is, and suddenly unable to see either. It was heartbreaking. For two days, he used his tiny fingers to prise open his swollen eyelids just to catch a glimpse of us. We held space for him, not always knowing how to help, but doing our best to anchor him through the haze.

Some moments offered surreal relief. His auntie came to visit. I popped down to the hospital cafeteria and bumped into Chase from Paw Patrol in the lifts. You take your joys where you can get them.

Shockingly, he was discharged after just four nights. While happy, I couldn’t believe it. We were sent home with this fragile, freshly operated-on little boy, whose skull now had all these new soft spots, and I felt like I was taking care of a bomb. I've always found soft spots stressful with both of my kids when they were born, and now here we were, doing it all over again with a child recovering from major skull surgery. We ended up having to shave off all his gorgeous curls as he started to look ridiculous with his little tuft of hair at the front. This was yet another stressful moment for me, but low stakes in the grand scheme of things.

I called the neurosurgery team repeatedly in the first couple of weeks we had him home, concerned that I could see all the grooves in his skull, concerned his stitches looked too pink, just... generally concerned. The nurse in charge was extremely patient, and explained all my concerns were just normal stages of healing.

But now? Elias is doing brilliantly. His hair has grown back, he’s back to his happy, stubborn self, and his latest scans show everything is progressing well. The incredible team at GOSH is happy, and so are we — relieved, grateful, and still processing everything.

Sometimes, in this life of complex parenting, you don’t realise the weight you’ve been carrying until you finally get to exhale.