Sophie’s new heart
It was Christmas Day and Kerryanne Maxwell, 31, was told that only one thing could save her little girl
My daughter Sophie was finally asleep. As I watched her little chest rise and fall, I forced back tears. It was Christmas Day and Sophie, just two years old, should have been playing with all her new toys at home, not lying in the emergency department of our local hospital, having been through hours of tests and scans.
that morning, she’d seemed fine as she’d opened her presents. but by lunch, she was burning up and my husband ian and i left our other children, Joshua, nine, and Nathan, five, with my mum and we’d brought sophie here to the Freeman hospital in Newcastle.
‘i’m afraid it’s bad news,’ the doctor said, coming over. he took ian and me to a side room and there we heard the words i’d feared hearing all of sophie’s short life. she needed a new heart – and without it she’d die…
it was during my pregnancy that doctors had first detected sophie’s heart problem. it was a rare defect called hypoplastic left heart syndrome. it meant the chambers on the left side were severely underdeveloped.
‘she’ll never be able to effectively pump blood around her body,’ a doctor said. ‘babies with the syndrome rarely survive to birth. if they do, they’ll face a lifetime of complicated heart surgeries and inevitably need a heart transplant.’ the oldest surviving person with the condition was just 27 years old.
as i wept, ian and i were told to consider a termination. ‘No,’ i said. ‘i’d never forgive myself if i gave up on my daughter now.’ While our baby was alive, there was still hope, wasn’t there?
So worried
so the doctors kept a careful eye on me and further scans showed there were no other complications. on 20 august 2013, at 39 weeks, i went into hospital to have an induced labour. When sophie arrived, her skin was tinged a strange bluish colour. she was taken to the special baby care unit. When i finally saw her attached to the ivs and drips, i burst into tears. ‘be strong, darling,’ i whispered.
at just five days old, sophie had her first open-heart surgery. i held her tiny hand all the way to the operating theatre. it was ice cold, her heart unable to pump the blood to keep her warm. after eight hours, the doctor came out. ‘it’s gone well,’ he said. ian and i hugged each other but we knew there was a long way to go.
We were trained in CPR in case sophie went into cardiac arrest when she came home. i’d sit by sophie’s cot all night, terrified of leaving her for even a moment.
she slept a lot and had to be tube fed on special high-calorie milk. but as the weeks passed, our determined daughter learnt to smile and loved it
‘I’d sit by Sophie’s cot all night, terrified of leaving her for even a moment’
when her brothers stood by her cot pulling funny faces. hearing her sweet little giggle gave me such comfort.
in april 2014, sophie was admitted to hospital for her second heart surgery. i became her full-time carer, so it meant we had to survive on ian’s salary as a customer services adviser. but as Christmas 2015 drew nearer, i did everything i could to make it as special as i could.
only now, here we were being told sophie’s time was running out. she’d be put on the transplant list for a new heart and all we could do was hope. For the next month, sophie stayed in hospital but, by the end of January, no match had been found and doctors agreed to let sophie go home. she’d be monitored at a fortnightly heart clinic.
Worst nightmare
then one morning in september 2016, i walked into sophie’s room and saw her lying in bed, listless, her skin tinged blue. Panicking, i dialled 999. Within minutes, an ambulance was at our door and sophie was being blue-lit to the Freeman hospital again. doctors confirmed her heart was failing. ‘she’s going to die,’ i gasped to ian.
doctors hooked her up to special drips to help revive her heart and we stayed with sophie, but every day, things got worse. sophie contracted an infection, causing her organs to shut down. ‘Perhaps we should consider stopping treatment,’ the doctors said. they meant it kindly, to stop sophie suffering any more. but i shook my head. ‘i’ve fought for her for three years,’ i said. ‘i’m not giving up now.’ then, 11 days later, as ian and i drove home from hospital one night, my mobile rang. it was sophie’s nurse. ‘they’ve found a match,’ she said.
the heart was being flown in from europe and ian and i rushed back to the hospital. at 12.40am, sophie was taken for surgery. Watching her eyes close with the anaesthetic, i longed for the time i’d see them open again.
New beginnings
the operation lasted all night, but neither ian or i slept. at 8.30am the phone rang. ian answered. ‘she’s pulled through,’ the nurse said.
When we arrived at sophie’s hospital bed, her skin already looked pinker. a scar ran down her chest and i marvelled at the thought of the new little heart in there, beating so strongly to keep my girl alive.
the next 17 weeks were anxious and fraught. there was a danger sophie’s body could reject the heart. sophie understood what had happened, but was more concerned about being well enough to get up and play with the toy pram in the hospital children’s room.
Finally, on 8 march 2017, she was strong enough to come home. When her brothers saw her walk through the front door, they ran to cover her in kisses and cuddles.
since then, she’s gone from strength to strength. sophie will need anti-rejection drugs all her life but she’s healthy, loves nursery and can’t wait for this Christmas. ‘it’ll be the best one ever,’ she says excitedly – and for ian and i, of course it will. We’ve watched our daughter fight back from the brink of death. Now, finally, it’s time for her to start living.
‘I longed for the time I’d see Sophie’s eyes open again’