I thought it was just a snuffly chest – now my 4-year-old daughter needs a new heart to save her life

Evie (right) with her brother, Theo (left). They're at the hospital, sitting on Evie's hospital bed. She's got tubes attached to her. Their arms are around each other and they're smiling at the camera.

My daughter, at four years old, is waiting for a new heart (Picture: Chloe Green)

‘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. 

At about three and a half months, I noticed Evie’s breathing changed (Picture: Chloe Green)

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. 

David and I are both on sick pay as we care for Evie (Picture: Chloe Green)

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.

Like I’d predicted, our whole lives had changed (Picture: Chloe Green)

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 …read more

Source:: Metro


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