Real life: My girl’s face won’t stop growing and no one can tell us why

I lay back on the hospital bed, smiling to myself, excited for the scan.

You’d think after five kids already I’d be a bit blasé about it all but I was just as excited as every other time.

“Here we go,” said the sonographer as she squirted cold jelly onto my tummy and placed the wand on it.

My husband Danny and I held hands and looked at the screen. When the picture came up, I gasped.

“Did you see that?” I whispered to Danny.

Our baby’s head was huge.

“Is there something wrong?” I asked the woman.

“No, don’t worry,” she replied. “It is bigger than normal but all babies’ heads are different sizes.”

She said they would monitor it for the rest of the pregnancy.

At six months, we found out we were having a girl and chose the name Katie. It was an anxious time. Further scans showed her head kept growing more than it should.

Finally, we were given a diagnosis. Doctors said she had something called megalencephaly, a rare brain disorder causing her brain to grow twice as big as normal.

It was scary, but worse was to come.

“I’m afraid she might not be born alive,” a doctor said.

There was nothing they could do. Danny and I were distraught. We felt so helpless.

With five other kids to care for I got through the next three months on autopilot. Every time Katie kicked inside me, I remembered I had to stay strong for her.

At 39 weeks my waters broke and Katie was delivered naturally.

As she came out I held my breath and then she started crying heartily.

“She’s alive,” I said to Danny, crying with relief.

She weighed a healthy 3.8kg but her body was tiny compared to her head. Her cheeks were each the size of a grapefruit.

But as I held her, I felt that familiar rush of maternal pride for my baby. She was different, but she was mine and I loved her.

Doctors had told us there was no treatment for megalencephaly. It was just a case of “wait and see” with regards to her development.

At two weeks Katie was able to come home. We introduced her to her brothers and sisters who all doted on her.

Things weren’t easy. She couldn’t breastfeed and refused a bottle. She also struggled to breathe. At 10 months, she had a tracheotomy inserted to open her airway. Doctors also put a feeding tube into her tummy.

That same month, she needed major brain surgery too. Her brain was growing faster than her skull and part of her frontal lobe had to be removed. Doctors had no idea what would happen to her.

“Will she even walk or talk?” I asked them, but they just shrugged. No-one knew.

Katie failed to reach all the normal milestones. She didn’t crawl, walk or babble. She suffered from scary seizures.

And her face just got bigger. Doctors had no idea why. Her enlarged brain was due to megalencephaly, but the fact her face kept on growing was a mystery.

They checked her for all sorts of other rare disorders but came up with nothing. All they could say was that she had some sort of overgrowth syndrome. Other people got them in their arms or legs. Katie had it in her face.

Her cheeks were made of extra blood vessels and fatty tissue. Her tongue was so huge it was on the verge of choking her. But removing it could cause her to bleed to death.

Eventually, they took half of it away, so it wouldn’t block her airway and it fit in her mouth.

She had to have numerous surgeries to downsize her cheeks as they kept on growing.

The size of her head meant she couldn’t sit up, and kept toppling backwards. Life was chaotic, particularly as I fell pregnant twice more and had two more kids.

I was Katie’s full-time carer. If she choked in her sleep, she’d die. Or she could have a seizure or a stroke.

She’s had surgery to remove her tonsils and to reduce the size of her left ear. She’s also had two cysts removed from the top of her head.

When she turned five, her body stopped growing. Her arms and legs were tiny. Again, doctors were baffled. We took her to a specialist in paediatric genetics in Florida but sadly he had no answers either.

It’s got to the point now where doctors are thinking of naming her condition after her. Meanwhile, we just try to make life as normal as possible for her, and for our other kids.

We’ve endured some nasty comments from strangers. Kids will say, “What’s wrong with her face?” but I don’t mind that because they’re kids.

But adults who should know better will gasp, or steer their children away from her.

What I want to say to them is that looks can be deceiving. Katie may not be able to walk or talk but she has a big personality. She makes her wishes known, scooting about on her bum and playing happily.

She goes to a special school where she does art, sport and plays outside.

She’s 10 now and I’ve lost count of the number of times she’s been under the knife. Katie has been fighting since the day she was born but she’s a happy, loving little girl.

She’s cheeky, too. She sets booby traps for us around the house. The other day, she put her foot out to make me topple over and when I did she roared with laughter.

“You cheeky monkey,” I said with mock annoyance.

Thankfully, she doesn’t know she’s different. She wakes up and is who she is. We have no idea how long she will be with us so all we want to do is make her life as happy and content as we can.

I can’t deny it’s been a tough journey. But during our darkest days she will smile or laugh and it cheers us up. She’s a beautiful child, a joy to us, and I cherish every day we have with her.