Just a 1% chance to live
Pregnant with a longedfor baby boy, I was also busy planning his funeral Ashley Hardy, 32, Peterborough
Grinning at my partner Davy, 36, I squeezed his hand tightly.
‘Would you like to know what you’re having?’ the sonographer asked. I nodded. ‘It’s a boy,’ he said. It was April 2017, and I’d been so excited about my 22-week scan.
After becoming a mum to Sharlene, 8, and Jessica, 4, I’d been longing for a son to complete my family.
And he’d been nine years in the making!
But as Davy and I kissed each other in celebration, I caught sight of the sonographer frowning.
‘I’ll have to get another doctor,’ he said.
‘What is it? What’s wrong with my baby?’ I asked, my stomach churning.
After both the doctor and sonographer had checked the screen, he told me, ‘It looks as though your baby might have a heart condition. It’s very rare, but can have very serious complications.’ This can’t be happening, I thought.
I’d been desperate for a baby boy for so long. Now it felt like my dream was being snatched away.
Over the next few weeks, I underwent a series of tests at Great Ormond Street Hospital in London. A consultant confirmed that our baby was suffering from hypoplastic left heart syndrome.
It meant that one of the ventricles in his heart hadn’t properly developed and would be unable to pump blood around his body.
‘For now, your body is keeping him alive,’ the consultant explained.
‘But when he’s born, there’s only a one per cent chance he will survive.’ One per cent.
On the train home, Davy and I sat in silence.
‘I think we should call him Benjamin,’ I said eventually. Davy nodded. For the next few months, I led a double life. I spent half the time searching for a children’s hospital willing to take on Benjamin’s specialist-care needs after the birth. Because his chances of survival were so low, not all of them would. That was if he lived. The other half of my time, instead of picking out prams and baby clothes and stockpiling nappies, I was planning his funeral. I spoke with local funeral parlours and chose a coffin – a white one with gold handles. I even picked the song we would play... ‘I want Wind Beneath My Wings by Bette Midler,’ I told Davy. It was one of my favourites, and I’d been playing it to Benjamin almost every day as he kicked away in my tummy.
My boy seemed so strong, so full of life. Everything felt so unfair. Over the next few weeks, my hopes of saving Benjamin’s life began dwindling.
Until a letter arrived from a children’s hospital – just four weeks before my due date.
‘They’re taking Benjamin’s case!’ I cried to Davy, scanning the letter. There was only one problem…
The specialist unit was in Newcastle, 200 miles from our home in Peterborough.
Because it was so far away, it was decided that I’d be induced in Newcastle, so that Benjamin could be whisked straight to Intensive Care.
So on 31 July, Davy and I packed some things and said
My boy seemed so full of life. It all felt so unfair…
goodbye to the girls.
‘Benjamin has got a very poorly heart,’ I told them both, kissing them on the cheek. ‘He might not be able to come home, but Mummy will be there to look after him.’
The next afternoon, as I waited to be induced, instead of excitement, I felt sick.
Terrified of what might happen to my baby.
That night, Benjamin was born, weighing 7lb 9oz.
He was crying – surely that was a good sign?
‘Is he OK?’ I begged as the midwife scooped him up and placed him on my chest.
Benjamin’s skin was a deep-red colour, his lips purple. Within seconds he was whisked away to Intensive Care.
Benjamin survived the first few days – but a week later, he took a turn for the worse.
He was rushed to surgery to repair some of the damage to his heart, but we were warned that it would only be a temporary fix.
And over the next few months, Benjamin’s health continued to deteriorate.
‘He’s unlikely to survive for much longer without a heart transplant,’ his surgeon told us after yet another operation.
But the chances of a suitable organ becoming available were incredibly rare.
By Christmas, I’d almost given up hope.
‘Maybe enough is enough,’ I sobbed on Davy’s shoulder one evening as we sat by Benjamin’s bedside.
He’d been so poorly, on the brink of death so many times.
It was taking its toll on our family, too.
Davy and I were taking turns to travel home to Peterborough for a week at a time.
When we both came to the hospital, the girls stayed with friends and family.
We couldn’t carry on like that forever.
I thought back to all the funeral plans I’d started making during my pregnancy. The coffin, the carriage... But in that moment, something inside me stirred. I’m not giving up on my boy, I thought.
In April this year, when Benjamin was 8 months old, we finally got the news that we’d so desperately been waiting for.
‘We’ve found a heart for him,’ the surgeon told Davy and me.
My knees buckled under me as I wept with relief.
Later that day, I kissed Benjamin on the forehead as he was taken to theatre.
For nine and a half agonising hours, Davy and I
paced the waiting room. Until... ‘Benjamin’s surgery went well,’ a nurse told us, beaming. My brave boy!
Benjamin spent the next few months recovering in hospital. On 20 June, after 324 days in hospital, he was ready to come home.
‘I never thought this day would come,’ I wept to Davy.
Sharlene and Jessica were beside themselves with excitement, too.
Apart from the piles of equipment and medication scattered around the house, we’re just like any other family.
But we know that for Benjamin to live, there’s another family out there who are grieving their loss.
We don’t know who they are, but we owe them everything.
And I’ll forever be indebted to the medical staff at Freeman Hospital in Newcastle.
Now, I’m trying to raise awareness of organ donation, and help families both donating and receiving such precious gifts.
As I watch Benjamin rolling on his play mat or giggling with his sisters, I know it was worth every second of the stress and heartache.
I’m just so glad I didn’t give up on my boy.
My knees buckled under me as I wept with relief