I thought it was just a snuffly chest. Now my 4-year-old needs a new heart

‘We suspect your daughter has dilated cardiomyopathy,’ the consultant said. 

‘It is a very serious condition where your daughter’s heart can’t pump the blood around her body correctly.’

His words seemed to echo around the room. ‘Surely this can’t be right,’ I thought, shaking my head. ‘Evie just had a snuffly chest – surely it’s just a virus?’

But there didn’t seem to be any doubt as he went on to explain that there is no cure, and that while some patients manage on medication or a device like a pacemaker, some go on to need a heart transplant and some, devastatingly, pass away.

My daughter, at four years old, is one of the ones waiting for a new heart. 

In those few moments, my whole world came crashing down around me and I realised then that everything had changed. 

I had been so excited to fall pregnant with Evie. Me and my husband David already had a little boy, Theo, who was just six months old. It was a bit sooner than we’d planned but, having always wanted a close age gap, it just seemed perfect.

I had a textbook pregnancy, and even gave birth on my due date in June 2019. Going home, our family felt complete, like Evie was the final piece of our puzzle. For the first three months, we lived in a beautiful, content – if sleep-deprived – bubble.

Then, at about three and a half months, I noticed Evie’s breathing changed. It had become quicker, noisier, as if she had a blocked nose. 

I took her to our local hospital, thinking it was bronchiolitis. All her other observations seemed fine, and they put it down to a virus.

But as the days went by, her symptoms got worse. She started sucking in her breath from her rib cage, her skin took on a slightly purple tinge and her health visitor commented that she’d stopped gaining weight. 

Doctors eventually decided to give her a chest X-ray and discovered her heart was enlarged. We were all in shock, it felt completely surreal.  

We were kept in overnight, then transferred to a larger, more specialist hospital the next day, where the consultants had given us this terrifying diagnosis.

He told us only time would tell how Evie’s prognosis would pan out and over the next few days, as Evie was put on treatment to try to regulate and strengthen her heart, I went from shock to mourning our old, normal life.

After 12 days, Evie was allowed home and despite having to go in for another 12 days for IV treatment six weeks later, she adjusted well to her medication and seemed back to herself.

Still though, like I’d predicted, our whole lives had changed. The slightest cough or cold could be critical for Evie, so I became anxious about taking both her or Theo out. If they so much as had a runny nose, I had to fight down panic.

When lockdown was announced in March 2020, and the country was instructed to stay inside, take extra care with washing hands and avoid spreading germs, it was something of a relief.

I could finally relax and Evie thrived, gaining weight and her sassy, cheeky personality shining. 

When lockdown came to an end, we booked Evie and Theo in with a childminder, to limit the number of children they came into contact with. But when it was time for Theo to go to school, in September 2022, Evie, then three, desperately wanted to join the school nursery too. The two were inseparable, she was like his little shadow, so I decided to register her.

But while on the outside, she looked as if she was having the time of her life – running around devotedly after her older brother and her new friends – the blood tests that measured her levels of heart failure started to fluctuate. 

The chances of her needing a heart transplant were looking more likely. 

But it takes longer to get a heart transplant if you are well enough to be at home – although the average wait time is 18-24 months, those who are critically ill are moved onto the super-urgent list and therefore get priority.

I was already bracing myself for the agonising wait.

Then in early 2023, her levels spiked so high that in February, we were readmitted to hospital.

This time, the IV medication didn’t help. Instead, as I sat by her bedside, I watched my little girl deteriorate before my eyes. Lifeless, she was admitted to intensive care.

I knew then that I would wait forever, no matter how excruciating, to get my daughter what she needed.

While ventilated in intensive care, Evie was fitted with a Berlin heart, a device that mechanically assists hearts to pump. With two pipes coming out of her chest, it is quite shocking to look at and at first David really struggled to see her like that.

For me, I was prepared for anything for her to survive.

Luckily Evie had already made a friend on the ward with a Berlin heart, so when she woke up, it wasn’t too big a shock for her, and we prepared Theo at home before we took him in.

‘It’s so cool,’ he gasped when he first saw her – and that’s how we have to see it. That however painful and heartbreaking it looks, it is amazing there is a machine that can help our daughter and her broken heart.

With the good, however, comes the bad, and having a Berlin heart raises Evie’s chance of having a stroke significantly – and they in themselves can be fatal.

Now, we are still waiting anxiously for a new, compatible heart to become available.

It’s a horrible situation to be in, one I wouldn’t wish on anyone. 

Unable to work, David and I are both on sick pay and we rotate staying with Evie at the hospital, then being at home with Theo. It’s so hard to have our family so fractured, especially when we need each other the most.

Most of the time Evie copes remarkably well at the hospital, with the nurses she has grown to love so much. But she and Theo miss each other terribly, and are always so delighted to see each other, even if it’s just on a video call.

It feels like we are in constant limbo, aware of how quickly life could change – for the better or the worse. I can’t look into the future at all, it’s too terrifying. We have literally no idea when we might get the phone call – it could be tomorrow, it could be in months. 

And we are also painfully aware that if a heart does become available, it will only be in tragic circumstances and of course, we don’t want another family to lose a loved one.

So few people think about what they would do with their children’s organs when they pass away – it’s a horrible thought and I completely understand why not.

But I’m asking you today, to please do exactly that. To consider giving families like us – and children like Evie – the greatest gift of all. Another chance at life.

Organ Donation Week is on 18th – 24th September 2023 and helps raise awareness of the incredible difference a donation can make. For more info, visit www.nhsbt/nhs.co.uk.

As told to Sarah Whiteley.

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