Why won’t my girl’s face stop grow­ing?

My feisty, brave, bril­liant girl is truly one of a kind...

Chat - - Inside - By Angie Ren­froe, 47, from Pax­ton, Florida

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

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