What do you do when the treatment for your CHD completely destroys your kidneys? Fourteen year old Eve walked this fine line just earlier this year. Eve was born in Liverpool, United Kingdom with Shone’s Complex. She’s had multiple medical interventions and open-heart surgeries, but as of right now, she may be facing one of her biggest challenges yet.
Eve had her first intervention just over a year old and her second right before she was two. This was before widespread information was readily available on the internet or social media support groups. It was before ECMO life support machines were widely used in the UK and surgery was still extremely risky. Her family was told if they did surgery and could not get Eve off bypass “she would have been switched off soon after,” her father, Dave, remembers. Then 10 years passed. 12 year old, Eve, had her third open-heart surgery – a 12 hour procedure that was successful but the doctors were unable to get her off bypass. Thanks to the modern medical advancements in the time since her last procedures, she was able to come out of surgery on ECMO. For 19 days the ECMO machine did the job of her heart and lungs to allow her heart to recover, but it took a major toll on her body.
For the entirety of her ICU stay she would also be on full HF dialysis. “She was critically ill and unfortunately the kidneys are the weakest organ in the body. The kidneys shut down when the body is in trauma and boy, was Eve’s in trauma,” Dave said. She had the highest CRP markers most of the consultants had ever seen. She was on over a dozen drugs. The HF filter was on full sepsis mode and eventually a build up of blood clots caused a massive cardiac arrest. But, the hospital team worked hard and “brought her back to us,” Dave said. Another surgery was performed to help with clotting and she was put on PD dialysis. During recovery, Eve had to learn how to hold her own weight again, sit up, stand, walk, eat and rebuild her strength. Her dialysis continued at home. But she couldn’t continue like this forever and a kidney transplant was desperately needed.
Dave and his wife Sarah were both tested and were both good donor matches. However, Dave decided he would be the one to donate. “Not because I wanted to be a hero but I felt it was my duty as her father to donate if I could. We had a special bond when she was a baby and have always had that,” Dave said. Being on dialysis is not easy — sickness every morning, lack of appetite and energy, fluid restrictions, and many more challenges come along with it. But Eve had no choice and Dave was going to be a part of this journey with her. Eve and Dave just had their successful kidney surgery a few weeks ago. They are recovering but are having a few issues so they are still in the hospital. “We are taking baby steps forward. Fingers crossed we continue that way. Take every day as it comes as we always have,” Dave wrote.
Eve is the youngest of four kids. She loves animals, cooking, baking, and her family. She has a big life outside of her CHD. However, she and her family have to live with the realization that she is not cured. Especially right now as she is still in the hospital. She ended up needing a kidney transplant because of the way CHD impacted her body. CHD disrupts way more than just the heart. Issues with blood flow can cause issues in other organs. Many Fontan survivors have liver problems as adults. It can be a body wide disease. “One thing that infuriates us is people think she’s fixed now!” Dave commented. There is no cure for CHD. Help us find one so that there are no more temporary fixes — but permanent ones.