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\u2018We suspect your daughter has dilated cardiomyopathy,\u2019 the consultant said.\u00a0<\/p>\n
\u2018It is a very serious condition where your daughter\u2019s heart can\u2019t pump the blood around her body correctly.\u2019<\/p>\n
His words seemed to echo around the room. \u2018Surely this can\u2019t be right,\u2019 I thought, shaking my head. \u2018Evie just had a snuffly chest \u2013 surely it\u2019s just a virus?\u2019<\/p>\n
But there didn\u2019t 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.<\/p>\n
My daughter, at four years old, is one of the ones waiting for a new heart.\u00a0<\/strong><\/p>\n In those few moments, my whole world came crashing down around me and I realised then that everything had changed.\u00a0<\/p>\n 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\u2019d planned but, having always wanted a close age gap, it just seemed perfect.<\/p>\n 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 \u2013 if sleep-deprived \u2013 bubble.<\/p>\n Then, at about three and a half months, I noticed Evie\u2019s breathing changed. It had become quicker, noisier, as if she had a blocked nose.\u00a0<\/p>\n 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.<\/p>\n 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\u2019d stopped gaining weight.\u00a0<\/p>\n 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.\u00a0\u00a0<\/p>\n 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.<\/p>\n He told us only time would tell how Evie\u2019s 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.<\/p>\n 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.<\/p>\n Still though, like I\u2019d 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.<\/p>\n 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.<\/p>\n I could finally relax and Evie thrived, gaining weight and her sassy, cheeky personality shining.\u00a0<\/p>\n 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.<\/p>\n But while on the outside, she looked as if she was having the time of her life \u2013 running around devotedly after her older brother and her new friends\u00a0<\/strong>\u2013 the blood tests that measured her levels of heart failure started to fluctuate.\u00a0<\/p>\n The chances of her needing a heart transplant were looking more likely.\u00a0<\/p>\n But\u00a0<\/strong>it takes longer to get a heart transplant if you are well enough to be at home \u2013 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.<\/p>\n I was already bracing myself for the agonising wait.<\/p>\n Then in early 2023, her levels spiked so high that in February, we were readmitted to hospital.<\/p>\n This time, the IV medication didn\u2019t help. Instead, as I sat by her bedside, I watched my little girl deteriorate before my eyes. Lifeless, she was admitted to intensive care.<\/p>\n I knew then that I would wait forever, no matter how excruciating, to get my daughter what she needed.<\/p>\n 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.<\/p>\n For me, I was prepared for anything for her to survive.<\/p>\n Luckily Evie had already made a friend on the ward with a Berlin heart, so when she woke up, it wasn\u2019t too big a shock for her, and we prepared Theo at home before we took him in.<\/p>\n \u2018It\u2019s so cool,\u2019 he gasped when he first saw her \u2013 and that\u2019s 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.<\/p>\n With the good, however, comes the bad, and having a Berlin heart raises Evie\u2019s chance of having a stroke significantly \u2013 and they in themselves can be fatal.<\/p>\n Now, we are still waiting anxiously for a new, compatible heart to become available.<\/p>\n It\u2019s a horrible situation to be in, one I wouldn\u2019t wish on anyone.\u00a0<\/p>\n 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\u2019s so hard to have our family so fractured, especially when we need each other the most.<\/p>\n 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\u2019s just on a video call.<\/p>\n It feels like we are in constant limbo, aware of how quickly life could change \u2013 for the better or the worse. I can\u2019t look into the future at all, it\u2019s too terrifying. We have literally no idea when we might get the phone call \u2013 it could be tomorrow, it could be in months.\u00a0<\/p>\n 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\u2019t want another family to lose a loved one.<\/p>\n So few people think about what they would do with their children\u2019s organs when they pass away \u2013 it\u2019s a horrible thought and I completely understand why not.<\/p>\n But I\u2019m asking you today, to please do exactly that. To consider giving families like us \u2013 and children like Evie \u2013 the greatest gift of all. Another chance at life.<\/p>\n![](\"https:\/\/metro.co.uk\/wp-content\/themes\/metro-parent\/img\/fallback.png\")
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