The bravest bridesmaid

We almost lost sweet Evie so many times

We all know how easily kids pick up bugs. But my daughter Evie was permanently sick. It was November 2014, and Evie, then 1, had a cold that wouldn’t budge, as well as a high temperature.

‘She’s getting worse’ I told my hubby Paul, now 34.

That December, we had to rush her to Colchester General Hospital twice after she became delirious, unresponsive and started vomiting. It was terrifying. Doctors said it was just croup – a common condition in childhood that affects the windpipe and airways. But that didn’t seem right to me.

Months passed, and we took her back to the doctor time and time again, convinced it was something else.

In April 2015, the doctor finally sent little Evie to Ipswich Hospital for an X-ray.

But I wasn’t prepared for what came next…

‘It’s dilated cardiomyopathy. We don’t know whether Evie will survive the night,’ the doctor told us.

Evie’s heart was so dilated, it’d crushed her left lung.

Filling up the entire left side of her chest, it was more than double the normal size, and had lost 80 per cent of its function.

The doctor said Evie’s heart and body were working so hard, it was like running a marathon every day.

‘A third of children manage on drugs, a third have a heart

transplant and a third pass away,’ the doctor added gravely. I ran outside and vomited. Just days before, Evie had been running around with her friends. And she was due to be a bridesmaid at my sister Lauren’s wedding in just over a year’s time.

But, that night, my baby girl was rushed to the Evelina London Children’s Hospital.

Straight into Intensive Care, Evie needed intravenous meds and blood thinners.

Eight weeks later, doctors decided the medication wasn’t enough. Her heart was failing. And, one night that June, she deteriorated rapidly.

With her oxygensaturation levels falling by the second, and her heart beating twice as fast as normal, Evie was on the brink of cardiac arrest. We could only watch, helpless and heartbroken, as doctors tried to save her. Thankfully, she pulled through.

But what about next time?

Soon, Evie was whisked off to Great Ormond Street Hospital. There, she was added to the hearttransplant waiting list. But, for now, she’d need the Berlin Heart – a mechanical heart – fitted to keep her alive. ‘Betsy!’ she named it, unaware of the gravity of her situation. Despite the operation going well, there were more battles for Evie to fight. Multiple uncontrollable strokes caused blood clots, which resulted in brain injuries. On a knife edge, we could only live minute by minute. ‘We’ll get through this,’ Paul and I said when one of us was crumbling. We didn’t dare leave the hospital in case something happened to Evie. Nothing else mattered but her. ‘Mummy’s here,’ I said, as I tried to comfort her after a major stroke. She was wailing, hunched over, her face droopy. I’d never seen her so sad. After the strokes, Evie had severe left-sided weakness, and her peripheral sight was lost. She

I’m eternally grateful to the donor and their family

was just so poorly.

In the August, we were given the worst news. Evie had been taken off the transplant waiting list.

‘She wouldn’t survive the op,’ doctors said.

Knowing Evie was on the list had been our last bit of hope. Sobbing, I couldn’t breathe. But, if Evie got stronger and the blood clots stopped, she could be back on the list in three weeks. And she did it! In the autumn, Evie was moved to the High-dependency unit. We waited, holding out for news they’d found a match.

‘I can’t get married without Evie there,’ Lauren told us, postponing her wedding. Days later, a match was found! With her soft toy bunny in her arms, we sang Twinkle, Twinkle, and held her hand as the anaesthetic took effect.

‘It went well,’ the surgeon said after the eight-hour procedure.

Such a relief!

After a few days, the doctors weaned Evie off the ventilator.

She seemed better than ever – but it didn’t last long. A virus almost killed her, collapsing her lungs. With no immune system because of the immunosuppressant meds she’d been put on, it was touch-and-go.

But, once again, my girl fought hard, until…

‘You can go home now,’ the doctor told us.

‘Are you sure?’ I asked over and over again.

But Evie still had a long way to go. To start with, she could only just sit up. But she began physio, and, after a lot of work, she began walking with support.

In June of this year, there wasn’t a dry eye when she walked up the aisle at Lauren’s wedding, looking like a little princess.

She’d made it!

Now 4, in September, Evie started school. I felt so blessed that she was still with us.

It’s devastating that someone’s child had to die so that ours could live. But I am eternally grateful to the heart donor and their family. And to everyone who donates blood.

We’ll never know who Evie’s donor was, but they saved my daughter’s life.

To find out more about organ donation and how you can put yourself on the register, visit organdonation.nhs.uk