Just a 1% chance to live

Preg­nant with a longed­for baby boy, I was also busy plan­ning his fu­neral Ash­ley Hardy, 32, Peter­bor­ough

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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

Ben­jamin spent al­most a year in the hos­pi­tal Big sis­ters Jes­sica and Shar­lene

His chance of sur­vival was just one per cent

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