Health
I had no idea that I was ill, let alone putting my children at risk... Christy Barrett, 34, Rotherham
Feeling his tiny weight on my chest, I willed my newborn son to scream or wail.
Silence.
‘Is he OK?’ I asked. Saying nothing, the midwife scooped my baby Harrison into her arms, rushed him out of the room.
Watching them leave, my panic rising, I saw the doctors were having to resuscitate him.
What was happening to my boy?
I’d learnt I was pregnant in September 2015, and apart from the 20-week scan showing my baby had a club foot, everything had gone smoothly.
Yet now, in May 2016, I lay in the Maternity ward at Bassetlaw Hospital without a baby to cuddle.
Not knowing whether Harrison was alive or dead.
Two agonising hours later, I laid eyes on him again.
Wires snaked around his tiny body, a ventilator helping him to breathe. Harrison needed specialist care, so we were transferred to the Jessop Wing in Sheffield.
The next few days were restless. Me and my husband Gavin, 39, took it in turns to sleep by Harrison’s cot.
We had our daughter Isla, 5, to think of, too.
But when she asked me, ‘When’s the baby coming home?’ I didn’t know what to say.
‘He’s poorly,’ I said. ‘Once he’s better, your brother will come home.’
I wasn’t sure I believed my own words.
Then, one day, the doctor asked me to take Harrison’s fingers in my hand, squeeze them tight, then release them. Only, I couldn’t. ‘Why can’t I let go?’ I said, struggling to open my hand.
‘The locking of muscles is a symptom of myotonic dystrophy,’ he said.
I’d never heard of it. Couldn’t understand what it had to do with Harrison being ill.
The doctor explained it’s part of a group of inherited disorders called muscular dystrophies. It’s characterised by progressive muscle wasting and weakness.
And I was a carrier.
‘But I’ve never had any symptoms,’ I said. That’s when we were told my strain rarely showed symptoms until later in life.
Blood tests not only confirmed I was a carrier, but that Harrison was living with the most serious form of the disease, congenital myotonic dystrophy.
That’s why he couldn’t breathe or eat unaided.
Treatment was practically non-existent. As for a cure, there isn’t one.
Even after ops to make eating and breathing easier, Harrison struggled.
By the time he was 7 months old, he was on end-of-life care. Devastated, I blamed myself. ‘You didn’t even know you had the condition,’ Gavin soothed.
He was right. I didn’t know – let alone that I’d pass it on to my children.
Isla could start to develop symptoms as she grows up.
And we could lose Harrison before his first birthday.
Determined to make memories while we could, we reached out to Bluebell Wood Children’s Hospice.
With a family room for us, and a nurses’ station next door, it became a home-from-home.
Even treating us to delicious meals, the staff made sure Christmas was magical for Isla.
For those times when they made us feel like a normal family, I was beyond grateful.
And in January 2017, something began to change.
Harrison no longer seemed so sleepy. His breathing improved.
As he giggled at Isla and Gavin, I could finally see his personality shining through.
‘He looks so much better!’ exclaimed the doctor at his checkup in March 2017.
She was so impressed, she took him off end-of-life care.
A wave of relief and joy rushed over me.
‘I always knew he was a little soldier,’ I smiled to Gavin.
Now Harrison is home and going from strength to strength. Even started to stand using aids, and babbles away happily.
We don’t know what the future holds, but we’re making the most of every moment.
At 7 months, he was on end-of-life care. I was devastated