As a first time mum, I’d dreamed of the moment I’d finally get to hold my bub in my arms. But as soon as Eliza entered the world, it was clear that wasn’t going to happen.
‘What’s wrong with her?’ I gasped.
There was no skin on the front of her right leg or left foot, and her face and hands were bright red. It looked like she had third-degree burns. My husband Wayne, now 49, and I watched in horror as our screaming baby was whisked away to be checked.
‘It’s as if she’s been dipped in boiling water,’ a paediatrician said, baffled.
A doctor broke the news she could have a genetic skin condition called epidermolysis bullosa (EB). I’d never heard of it, but we were advised not to research it. Instead, I had to stay and recover from the birth while Wayne and Eliza were rushed to the Royal Children’s Hospital in Melbourne. Alone on the maternity ward, my heart was full of love but my arms were empty.
Is my girl going to survive? I panicked.
When I was discharged the next day, I raced to her side. Eliza was in an incubator in intensive care, her skin red raw. A biopsy had been sent away for testing.
‘There are three types of EB,’ a doctor explained. ‘We just have to hope it’s the mildest form.’
Devastatingly, the results showed Eliza had the most severe. Finally, we were told what it meant. EB is a rare disease where the skin is as fragile as a butterfly’s wings. It blisters and peels at the slightest touch, leaving open wounds susceptible to infections.
‘Sufferers are often very small as most of their nutrition is taken up by healing,’ the doctor explained to us.
EB even affects internal linings and causes mobility to deteriorate. There was no cure. And no time to grieve. We had to learn how to recognise and medicate Eliza’s pain, manage her wounds and apply special dressings.
After two weeks, Wayne and I took our butterfly girl home. One of us would soothe Eliza with a bottle while the other swathed her in bandages. Sometimes, she became so distressed that my mum, Margaret, had to help hold her still. It was heartbreaking seeing her in so much pain.
We couldn’t even cuddle her properly. We had to hold her on soft lamb’s wool. Thrashing about in the night, our poor bub would knock her skin, damaging it as easily as a wet tissue.
Exhausted, I don’t remember much of the first six months of her life. When Eliza moved onto solids, it became harder. She could only eat tiny amounts of soft and pureed foods so they didn’t scar her throat. Fortunately, when we had another little girl, Ellie, she wasn’t a carrier of the gene. Eliza doted on her sister.
‘Can I feed her today?’ she’d plead.
Before she started school, we taught Eliza how to answer questions the other kids might have.
‘I have skin like a butterfly’s wings,’ she told them.
She was just like any other little girl her age and made lots of friends. When we were out shopping, people would sometimes stop us.
‘My daughter had eczema too,’ one lady said.
They always meant well, so I’d explain what EB is. ‘It’s the worst disease you’ve never heard of,’ I said.
Eliza took it in her stride. ‘I have to protect my skin with bandages,’ she’d say.
They made her incredibly hot, like wearing five jumpers, so she needed cool cotton clothing. Not wanting our girls to miss out, we tried to keep life as normal as possible. At the beach, Eliza would sit in the shade in full-length tops and trousers.
Due to the agony she was in and the scarring restricting her movements, Eliza needed to get a wheelchair when she was 10.
Now 17, she has a special bath every other evening to remove the bandages and clean her skin. The water is mixed with a kilo of salt to stop it stinging, and a cup of bleach to prevent infection. Afterwards, we carefully bandage her whole body, taking care to wrap each finger and toe individually.
It takes three hours, then minor dressings before school take an hour. Every six months, Eliza also needs throat dilation, to stretch her oesophagus and make swallowing easier. Her courage never fails to amaze me.
‘Do you ever stop to wonder why?’ I once asked her.
‘I know why,’ she said. ‘I was born with EB.’
It’s thought there are around 1000 people in Australia affected by this cruel disease. I’m family support co-ordinator at the Dystrophic Epidermolysis Bullosa Research Association Australia (DEBRA), helping others to access medical and support services.
I want to show them they can have a happy life after diagnosis. Eliza is now in Year 11. Her pain goes up and down, but she never stops chatting. She loves to cook and wants to study diet and nutrition. If she goes away to uni she’ll need someone to help her.
But we’ll do what we can to help Eliza achieve her dreams – to help her fly like a butterfly.
Eliza, 17, says:
Sometimes EB feels like your skin is burning, throbbing or stinging, depending on the type of wound. Some days aren’t as bad as others but there is always some sort of pain. EB certainly has restrictions and there are some things I just can’t do. However, it has definitely made me a stronger person.
￼This story was originally published in that's life! Issue 16, 20 April 2017.