Wendy Morgan, 25, Tamworth, NSW
Love coursed through me as I held my baby for the first time.
My perfect little girl, I thought as the nurse laid Amelia-Rose on my chest.
But looking down at my bub, my breath caught in my throat. I can see her brain, I realised, horrified. My precious girl had been born with half a skull!
The hole was covered with cling wrap so that her brain wouldn’t dry out.
‘My poor baby,’ I sobbed to my husband Will, 31.
Transferred to a bigger hospital, Amelia-Rose was diagnosed with Finlay-Marks syndrome. An extremely rare genetic condition, it’s characterised by scalp, nipple and ear abnormalities.
I was born with a huge birthmark on my head, cauliflower ears and no nipples, so I knew exactly what it was. But I’d never heard of a case as severe as my bub’s.
‘Please help her,’ I begged the doctors.
First, they grafted artificial skin over her brain. Two weeks later, the gap was closed over with skin from her thigh.
After two-and-a-half months in hospital, we were able to take her home with a special purple helmet.
‘You’re my warrior princess,’ I tell her.
With a feeding tube in her tummy, our girl’s had a tough trot. But Amelia-Rose has always got a smile on her face.
Now, our brave daughter is nearly three. Tottering about and saying ‘hello’ and ‘see ya’, she’s so cheeky.
But I’m constantly scared she’ll fall down and knock her head.
Next month, doctors will insert expanders into her head to slowly stretch her skin. In July, they’ll use one of her ribs to patch up her skull!
Marvelling at my girl, I can’t believe how far she’s come.
My Amelia-Rose just keeps blossoming.
To contribute to Amelia-Rose’s medical expenses please visit her GoFundMe.
- Otherwise known as scalp-ear-nipple syndrome, the condition can also cause dental problems, brittle nails and webbed fingers or toes.
- It is caused by mutations in the KCTD1 gene, which plays an important role in the regulation of other genes in the body.
- If a parent has the syndrome, the risk of having a child with it is 50 per cent.
This and other amazing real life stories in the latest issue of that's life! On sale now!