Craniosynostosis and Chiari malformation: Boys has three surgeries in three years

Three-year-old Jagger already knows what he wants to be when he grows up. A doctor – just like the ones who gave him a second chance at life. The family share their story with Journalist, Carrol Baker.

When Jagger was nine months old, doctors realised the bones in his skull had fused together too early. It’s a condition called Craniosynostosis, and they had to operate on his skull to allow more room for his brain when he was 10 months old.

The operation was a success, and life went on as normal for us, Jagger just needed regular checkups. Then two years later, a routine checkup with an Ophthalmologist, picked up pressure on the back of his eyes. They did an MRI and discovered Jagger also had a different brain condition, a Chiari malformation. I’d never heard of it. The Neurosurgeon explained that it’s where the brain tissue extends into the spinal cord, so there was crowding at the bottom of his brain. He would need another operation to fix it.

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Craniosynostosis and Chiari malformation: Boys has three surgeries in three years

Jagger with his mum and dad. Source: supplied.

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I couldn’t believe he had a second brain condition

I remember driving home after the second diagnosis, thinking is this really happening again? The days leading up to the operation were such a blur. I was so nervous during his operation, but it went well, so that was a big relief.

When he came out of the anaesthetic, he was in a lot of pain. Jagger looked up at me and said, « Mummy, Mummy, » he was frightened, all I could do was hold his little hand and reassure him. If I moved away from him, he would start to fret. He was only three and for him, hospital was a big scary place. The doctors carefully monitored him; and at first, he had a dedicated nurse looking after him. Because of COVID, only one parent was allowed, so I’d go in and then my husband would come in, we were like a tag team one of us was always there with him.

But then Jagger developed a leak at the operation site on the back of his head. It started to drip spinal fluid – they glued it, then restitched it, hoping it would stop. Finally, we were able to take our little boy home. But unfortunately, it wasn’t over for us. A couple of days later, he looked really unwell and he wasn’t eating. After he had a shower, I noticed it was leaking again. So, we went back to the hospital, where we were admitted through Emergency. They did further testing and discovered the leak was coming from the inside of his skull. That meant another operation!

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Craniosynostosis and Chiari malformation: Boys has three surgeries in three years

Jagger was scared in hospital. Source: supplied.

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Jagger was so frightened being in hospital

It was a really stressful situation, but the staff at the hospital were so supportive, I asked lots of questions, sometimes I’d just burst into tears. It was overwhelming. They had to reopen the same wound and then repatch it, and he needed a drain in for a while.

I was beginning to grow concerned about the long-term effects of the trauma of him being in hospital – he was still so frightened of the doctors and nurses, and everything going on around him. He didn’t want anyone to touch him, he’d get really distressed.

He struggled with eating the hospital food too – I just wanted him to get well, so I could take him back home and cook him his favorite cheesy meatballs to get some colour back in his cheeks.

And he was missing his sister Scarlett so much, they share a really beautiful relationship. Fortunately, my husband Jye and Scarlett were able to come down for a week and stay at Ronald McDonald House.

Craniosynostosis and Chiari malformation: Boys has three surgeries in three years

Jagger and his sister, Scarlett. Source: supplied.

The Starlight Room was a wonderful distraction for him

Then we discovered the Starlight Room, and that made the stay in hospital a lot easier for Jagger. He wanted to go every day. He loved the toys and play dough; they had a kiddy pool and the Captains would hold it while he threw balls in the pool. After a few days, he began to relax more, I began to look forward to it too – and he was smiling again, even when his head was hurting.

Finally, he was allowed to go home, and before long he was riding his bike and scooter, and playing with his sister. Jagger is a real little adventurer, he’s always laughing, and playing.

I look at him now and think it wasn’t that long ago he was laying in that hospital bed; he was so sick. He has recovered well. We were really lucky throughout all this, we have really supportive friends and family, and Starlight was there for us too.

Jagger will still need to be monitored for the Craniosynostosis, every year to make sure that his skull is growing as it should be, and that there are no complications.

I hope this is the last of it, that there will be no more surgeries. I just want him to be a happy little boy, to do amazing things, and to chase his dreams. He told me that one of them is to be a doctor, that’s what he wants to be when he grows up, so he can help people, like the doctors in hospital helped him when he was sick.

Ride the distance this September with Starlight’s Tour de Kids challenge. Visit the Tour de Kids website for more information.