There was no room for my boy’s brain

Flex is a little fighter!

While most mum’s can’t wait to add the finishing touches to the nurseries ready for the arrival of their new babies, Lucy Dan found herself in a very different situation.

At just 20 weeks along in her pregnancy an ultrasound revealed that her baby might not survive due to a severe skull defect.

But, Lucy was determined not to give up on her boy. Here, she tells her story in her own words…

Hearing the thump, thump of my baby’s heartbeat echo throughout the room, I was already so in love.

Just two weeks earlier, my husband, Aaron, and I had discovered we were having a boy.

Now, as I glanced at the grainy image on the screen, I couldn’t wait to hold him in my arms.

Just seconds later, though, the sonographer pointed out that the folds on the back of our son’s neck were measuring quite thick.

Revealing that it was often a symptom of conditions such as Down syndrome, she referred us to a bigger hospital where they were better equipped for a more in-depth ultrasound of our bub.

Thankfully, the second scan revealed there were no other red flags to be concerned about.

We’d just need to keep a close eye on how he was growing throughout the pregnancy.

At 20 weeks, however, another ultrasound revealed his neck folds were still quite thick and the bones in his skull appeared to be measuring bigger than usual.

Referred to a craniofacial specialist in Sydney, we were dealt a devastating blow.

‘I think your son has cloverleaf skull,’ she said, explaining it was a severe form of craniosynostosis that caused our boy’s skull bones to fuse together.

It meant there was no room for our baby’s brain to grow.

Though the specialist couldn’t be sure of his diagnosis until he was born, she warned it could lead to other issues, such as intellectual impairment and even death.

‘You have the option to end this pregnancy any time you want to,’ she gently explained.

Crushed, Aaron and I were lost for words.

Being a first-time mum, I’d been so excited to decorate our baby’s nursery ready for his arrival.

Now, I just felt foolish for getting ahead of myself.

He might never get the chance to ride a bike or kick a footy around with his dad, I thought sadly.

But I’d already grown so attached to the life growing inside me, I knew we had to give him a fighting chance.

As I stared at the ultrasound photo of our son over the next few weeks, I couldn’t help but notice his face looked quite symmetrical compared to images I’d seen of other children born with craniofacial conditions.

It’s how I managed to convince myself everything was going to be okay.

Flex after his first surgery (Credit: Supplied)

Then, in January 2020, our little fighter was born.

We named him Flex and he let out a huge cry as he was placed on my chest.

The shape of his head was quite long, but to us he was perfect.

The following day, his diagnosis was confirmed as cloverleaf skull, just as the specialist had predicted.

‘Without treatment, he won’t survive,’ we had been warned.

So, once he was strong enough, he’d need to undergo several operations in his first year of life to make sure there was enough room for his brain to grow.

Then, when he was just nine weeks old, a CAT scan revealed there was already pressure on his brain.

So he was rushed into surgery where several bones were removed from the back of his head to alleviate some pressure before his big procedure at around 12 months.

Afterwards, he was like a whole new baby, smiling and laughing all day long.

Then two months later, in June, another scan showed the bones in Flex’s head had already closed back up, so he’d need to have his skull completely rebuilt to save his life.

Talking us through the complex procedure, the surgeon explained that he and his team would use a 3D model of Flex’s head to practise on before the operation.

Thankfully, our boy didn’t seem to be feeling much discomfort.

When the day finally came in December last year, I was racked with nerves.

Luckily, I was able to nurse Flex in my arms up until the moment he was taken into theatre.

‘I’ll be here when you wake up,’ I promised him.

It took a team of surgeons seven long hours to remove the fused bones in his skull and replace them piece by piece like a jigsaw puzzle until it was all complete.

Visiting him in the ICU when it was over, our poor little boy was hysterical.

‘You’re so brave,’ Aaron told our bub, trying to calm him down.

Incredibly, just six days later, Flex was cleared to go home.

Flex now (Credit: Supplied)

Now, two months on from his life-saving op, he’s happier than ever before.

Aside from the very prominent scar across his head, Flex is just like any other one-year-old boy.

Obsessed with all kinds of wheels, he loves playing with his collection of trucks and cars.

Celebrating his first birthday with family and friends last month, we felt so grateful that he’d been given a second chance at life. Better still, he’s due to become a big brother in June.

Some days it’s hard to believe just how much Flex has overcome in his short life so far.

With his bravery and determination, we’re confident he’ll achieve anything he sets his mind to.

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