Cypres Salon, 37, shares her true life story:
All my husband, Dale, and I had to go on were the doctor’s brief words as our little girl was whisked to NICU.
“Something’s gone wrong,” he said. I was so scared. What did he mean? When I looked into her crib, I gasped in shock.
“What have I done to her?” I cried to Dale. Our girl’s nose ballooned from her face, almost obscuring her tiny left eye.
“She has encephalocele,” the doctor said.
The condition meant our daughter’s skull and the tissue surrounding her brain hadn’t completely joined together while she’d been in the womb and caused a hernia to form on her face.
It was so big and bulbous I could hardly see my little one’s features – the doctor’s reassurance that Angel would survive wasn’t much consolation for me.
Wracked with guilt, I blamed myself. Family and friends visited, all rallying round as we waited to hear what treatment was available.
“She’s an angel,” Dale’s sister, Ruby, said. Taking another look at my bub’s face, I saw the truth in those words.
Our little girl might not be the same as the other newborns on the ward, but she was still perfect to us – so that’s what we decided to call her, Angel.
Angel’s siblings, Cyrus and Cyrne, didn’t even flinch when they met her.
But my eldest daughter, Cybel, started to cry.
“Angel’s different but she’s special,” I reassured. “We don’t know what will happen, so we’ve got to fill her life with happiness and cuddles.”
Taking Angel home one month later was a huge relief. I was still able to breast feed my daughter and bond with her like any other mum.
But only a few months later, we were back in hospital for Angel to have surgery to try and separate the hernia from her brain. Dale and I waited nervously for news.
“The operation was a success,” the doctor said, four hours later.
While her brain was now safe, the huge lump on Angel’s face remained. Although it didn’t change the way we felt for our girl, it did present us with some challenges.
As Angel grew up, the lump got in the way as she tried to play with her cousins and siblings. She couldn’t see properly without moving it from side to side, which made it hard for her to play games.
At night, Angel slept on her side, tucked in bed between Dale and I. If she rolled on to her back, the hernia could droop over her mouth and cut off her airway so Dale and I woke throughout the night, just to check she was still breathing.
Despite everything she’d gone through at such a young age, Angel radiated with optimism. She made jokes, always smiled and wasn’t scared of looking in the mirror.
“I’m beautiful!” she proclaimed.
Sadly, other people were less accepting.
To me, my girl was perfect.
One day, a boy about the same age as Angel came up to us.
“Monster!” he cried, pointing at Angel’s hernia. My blood boiled – how dare he!
But before I could tell the boy off, Angel gently touched his shoulder.
“Hi,” she smiled warmly. My anger was replaced by pride. Our girl was only four years old, but she was so brave.
Still, it still broke my heart she had to endure those awkward stares and cruel comments, all because of how she looked.
We researched surgery to remove the hernia, but it would cost thousands of dollars.
I worked as a civil servant while Dale cared for the kids. Cash was tight.
“There’s no way we can afford it,” I said sadly. Going online to research our options, I discovered a story about a Filipino boy who’d also had encephalocele.
A charity had flown him to the States for surgery.
“I’d give anything for that same miracle to happen to Angel!” I thought. I fired off an email to the hospital in America and to my surprise, they replied.
I was put in contact with Interplast, a group of surgeons from Australia and New Zealand who volunteer their skills for people who can’t afford treatment. After telling them her story, Dale and I were gobsmacked when Angel was accepted for surgery.
The operation would take place at the craniofacial unit at the Women’s and Children’s Hospital in Adelaide and a charity called the Children First Foundation agreed to fly Angel to Australia.
My girl’s future was suddenly looking brighter. Dale and I agreed he would go with Angel, while I stayed home with the other kids.
“I want you to come, Mama,” Angel said.
Saying goodbye to Angel and Dale was bittersweet; We’d received an amazing opportunity, but deep down I wanted to be there with them.
On the morning of her surgery, Cyrus, Cyrne, Cybel and I sat together, thinking about our girl.
Hours passed before my phone beeped with a message from Dale. Opening it, I let out a gasp – it was a photo of Angel.
A bandage covered her eyes and a zig-zag of stitches crossed her skin, but for the first time I could see my baby’s face.
We’re so grateful to Australia!
I burst into tears to learn doctors removed 200g of abnormal brain tissue and fluid before using bone from Angel’s hip to close the hole in her forehead. Three weeks later, Angel and Dale arrived home.
“I have my new face,” Angel breathed, nestling into me as we cried together. Although she’ll need further surgery in the future to reconstruct her nose, Angel’s almost forgotten the hernia was ever there.
Her new face has changed her life so much. The stares and whispers have stopped, she’s able to play lots more games and can fall asleep any way she wants!
I’m so grateful Australia made our wish come true.
