My cheeky girl

What was happening to Deya's cute baby face?

Published by: Laura Hinton & Emma Pietras
Published on: 23rd June 2011

Don’t you wish you had two pairs of hands, and eyes in the back of your head sometimes?! Especially as a single mum.
My three children were in the back of the car, and it was chaos!
Ryan, four, was asking for a drink, his two-year-old sister Saffron was singing along to the radio, in between kicking the back of my seat and…
Glancing in the rear view mirror, I did a double take.
‘Is Deya okay?’ I asked Ryan.
Her cheeks seemed to have swollen up, and a red rash was spreading over them.
But Ryan, who was strapped in next to her, was too busy trying out the moves he’d learned at martial arts on Saffron.
‘Ryan,’ I snapped.
‘Her face is hot,’ he frowned. ‘Like a radiator.’
What did that mean? Did she have a temperature?
‘Okay, sweetie,’ I replied, hiding the worry in my voice.
Pulling over, I opened the back door and felt Deya’s face – sure enough, her cheeks were burning hot. Yet that didn’t stop her giving me a big smile.
Something was wrong, though. And this wasn’t the first time I’d been worried about Deya’s cheeks.
When she was born four weeks ago, the sides of her face had looked bruised. I’d even mentioned it at her one-week check-up.
‘Is it bruising from the birth?’ I’d wondered.
‘Could be,’ the health visitor had said. ‘I’m sure it’ll fade in time.’
But her cheeks had always seemed pinker than normal to me. Pink was one thing though, this was more serious.
The doctor agreed, and sent us to Bristol Hospital. ‘When you see a rash, you think meningitis or an allergic reaction…’ I babbled nervously to the specialist.
‘It’s neither,’ he reassured me. ‘It’s a strawberry hemangioma. Large numbers of her blood cells are growing near the surface of her skin, causing it to swell and turn red,’ he explained.
‘It’ll probably fade by the time she’s two,’ he added. ‘We’ll put her on a course of steroids to reduce the swelling.’
Back home, Deya was her happy little self and the swelling certainly didn’t stop her from smiling every time I sang her favourite Twinkle Twinkle
Little Star.
Yet I was sure that, even though her smile was big, it was getting wider too. The swelling was getting worse.
Still, I reassured myself I had to let her steroids start working before I should worry.
But, three months later, I was breastfeeding Deya when my arm suddenly felt damp.
Looking down, I gasped. Blood was trickling along my elbow.
Was it coming from me or Deya?
Panicking, I lifted her away and nearly screamed. Although Deya seemed perfectly happy, smiling as ever, her swollen left cheek had split open and was gushing blood.
‘Ryan, Saffron… get your shoes,’ I called, trying to stay calm. ‘We need to go to hospital.’
Ryan took one look at Deya, and the colour drained from his face.
‘Is she going to be okay?’ he whispered. ‘She’ll be fine,’ I said.
At hospital, the doctor explained what had happened.
‘Deya’s birthmark ulcerated,’ he said. ‘We’ll change her steroids, and keep her in until it’s back under control.’
Later, after the kids had gone to stay at my mum’s, I stood by Deya’s incubator and watched my little girl sleeping.
The podgy baby flesh I was used to seeing on her cheeks had stretched even further, revealing two dark swollen lumps. My poor baby had cheeks like a hamster.
As tears pricked my eyes, Deya suddenly stirred. Recognising me, she tried smiling, but her cheeks were too swollen.
After that, Deya was in and out of hospital as doctors tried to adjust her medication. But nothing seemed to work.
In fact, her cheeks swelled so much, they began to affect her breathing until, at four months, she had a tracheotomy fitted – doctors cut a hole in her throat and inserted a breathing tube.
She spent the next month in hospital while doctors tried to bring her ever-swelling cheeks under control. They even gave
her chemotherapy.
‘It can make babies sick,’ warned the doctor.
But my brave little girl kept smiling, she didn’t seem to suffer a single side effect. And, finally, we were able to take her home.
We had to be careful though, because she was still breathing through her tracheotomy.
‘You musn’t knock it,’ I told the kids. Ryan became fiercely protective of her, practising his martial arts moves extra hard.
‘In case someone comes too near,’ he told me.
But he needn’t have worried. Deya was a tough little thing.
As she approached her first birthday, her birthmark continued to fade and, one morning, I’d taken her with me to watch Ryan at martial arts class when I heard a strange gurgling noise.
‘Deya!’ I screamed, realising she’d yanked out her tracheotomy.
After everything she’d been through, was I going to lose her now?
Flinging her into her car seat, I raced to the hospital.
At each traffic light, each junction, I watched her intently in the rear view mirror, but she seemed fine.
And the doctor reassured me she was.
‘There’s no need to panic,’ he smiled. ‘Her oxygen levels are fine. Deya simply knew when she didn’t
need it any more,’ he added.
I felt my body slump with
relief, and that relief has only grown as Deya has.
Now five, her birthmark has almost faded completely and her cheeks only look a little puffy at certain angles.
She loves looking at photos of what she used to look like.
‘A boy at school pointed at my second belly button today, Mummy,’ she told me last week, referring to the small scar left on her neck from the tracheotomy. ‘Can I take the photo album in tomorrow to show him?’
I’m so proud she can stand tall, and show her friends what she’s been through.Whatever comes her way in life, I know she’ll tackle it head on… and always smiling.
Tracy Goldsmith-Ryan, 32, Bideford, Devon