Why won’t my girl’s face stop growing?
My feisty, brave, brilliant girl is truly one of a kind...
Settling onto the bed for my first scan, you’d think I’d be used to it.
After all, I was a mum of five already. I’d been there, done that, got the brood of kids to prove it!
But in 2007, three months gone with baby number six, I was just as excited as every other time.
Here we go! I thought, looking at the screen as the sonographer squirted cold jelly onto my tum.
But when the picture flashed up, I gasped.
I looked at my hubby Danny, now 53. Had he noticed too? ‘Is something wrong?’ I said. Our baby’s head was huge. ‘Not to worry,’ the sonographer replied.
They told us they’d monitor it throughout my pregnancy.
At six months, we found out we were having a girl and chose the name Katie.
It was an anxious time. And further scans showed her head kept growing more than it should.
Finally, we were given a diagnosis.
‘It is megalencephaly,’ the doctor said.
A rare brain disorder causing Katie’s brain and head to grow twice as big as normal.
‘I’m afraid that she might not be born alive,’ the doctor said.
There was nothing they could do. We were distraught, helpless. I don’t know how I got through the next three months.
Still, feeling Katie move even slightly in my belly kept me strong.
By some miracle, Katie arrived on 28 January 2008 at 39 weeks. Alive.
Weighing 8lb 9oz, her body was tiny compared with her head.
Her cheeks were each the size of a grapefruit.
Still, holding my girl, I felt nothing but love and pride.
There was no treatment for megalencephaly – but, after two weeks, Katie was stable enough to take home.
‘This is your baby sister,’ Danny and I told the kids – Bradley and Megan, both 19, Jessica, 17, Dannial, 16, and Canvas, 14.
But Katie was so different to her brothers and sisters. And not just in how she looked.
She wouldn’t take to her bottle. And she struggled to breathe.
At 10 months, she had a tracheotomy inserted to open her airway.
Doctors also put a feeding tube into her belly.
That same month, she needed major brain surgery too.
Katie’s brain had been growing faster than her tiny skull. Part of her frontal lobe had to be removed.
Doctors had no idea what would happen to her. Or whether she would ever learn to walk or talk. It was relentless. But while doctors had confirmed the megalencephaly, that didn’t explain her many other symptoms.
Katie failed to reach normal milestones. She didn’t crawl, walk or babble. She suffered from seizures. And her face just got bigger.
Doctors had no idea why.
Her cheeks were made of extra blood vessels and fatty tissue.
And her tongue was so huge it was on the verge of choking her.
Yet to remove it all could cost her life – she’d bleed to death.
They took about half of it away, so it wouldn’t block her airways, and eventually it fitted in her mouth.
The size of Katie’s head also meant that she couldn’t sit up, and
In our house, she’s the boss – makes her wishes known!
kept falling backwards. Life at home was chaos. Since Katie was born, I’d had two more kids, Kenneth, now 8, and Emalee, 6.
And I was Katie’s carer. It was a full-time job.
If she choked in her sleep, she’d die. Or she could have a seizure or a stroke. Life was overwhelming. We discovered Dr Sehitt through word of mouth from other doctors and surgeons. Since then, Katie has had endless surgeries. Ops to shrink her lips and cheeks, her tonsils removed, and they’ve reduced the size of her left ear, while her cheeks have been reduced several times. She’s also had a mysterious two cysts removed from the top of her head. Then, age 5, Katie’s body stopped growing. Her arms and legs were tiny. Again, doctors were baffled. It wasn’t linked to the surgeries, or any of her diagnoses. Through more surgeons, we were recommended Dr Roman Yusupov. He was a specialist in paediatric genetics. ‘She’s definitely one in a million,’ Dr Yusupov said, examining Katie. But sadly, he had no answers, either. Katie was tested for so many conditions, I can’t even remember them.
The results always come back negative.
But Dr Yusupov is helping us work out the mystery behind her genetics.
Katie still looks different. She always will.
We’ve heard some nasty comments from strangers.
What I wish I could tell them is that looks can be deceiving.
Katie can’t talk or walk but, in our house, she’s still the boss.
She makes her wishes known, scooting about on her bum, playing happily.
She goes to a special school, where she does art, sport and plays outside.
Now 10, she’s been under the knife more times than I can count. She’s fought a battle since the day she was born.
But she’s happy, loving and ever so loved.
We still have no reason, no explanation for her symptoms.
Doctors have even discussed naming the disease or syndrome after her.
I cherish every day we have with Katie and I will do for however long she’s in our lives. She’s special, one of a kind. I’ve never doubted that.
After one of her many operations Surrounded by love: with her brothers and sisters
My Katie I cherish every day with my special daughter
Playtime in the local park