A little girl who has spent more than a year in hospital has had a heart transplant.
Evie Green was diagnosed with myocarditis when she was just four months old – a condition triggered by simple viral infections that in serious cases can lead to heart failure. She was admitted to the Freeman Hospital Newcastle early last year and underwent emergency surgery to have a Berlin heart machine fitted, which carried out the function of the left ventricle.
She was placed on the urgent heart transplant list and doctors said she’s need to remain at the hospital until she underwent a heart transplant. Now, after more that a year, her family was told a donor heart had become available and Evie has undergone transplant.
Evie, who turned five last month, remains in hospital recovering, with her parents Chloe and David Green, and their son, Theo, six, by her side.
Chloe, 29 said: “We have received fantastic support from Red Sky Foundation from help with travel costs, to a respite break and also support in the form of having a new friend to talk to about this journey. Sergio has been fantastic during all of this and constantly asks if there is anything more he can do. He is always trying to figure out new ways of support which is so unique from a charity to speak directly to the people who need the support most.
“We got told about a potential offer but it was a lot of anxiety, it was a little bit of excitement. I think my way of control in this whole journey is to get equipped with information and know everything so when we got the call I knew all these problems were about to rise potentially.
“You get a sense of stability on the Berlin heart machine but also it’s reminding me they are well equipped to manage it and it progresses us to getting her home, rather than living life in hospital. It is about living life and that is the whole point of transplant, it is about extension of life and living it with the best quality.
“On a Berlin heart machine you aren’t living life properly, you are living it attached to a machine in hospital. I’m still cautious saying she’ll get there but she’s on the road now, still recovering. It was quite a stressful day.”
Now, the family are focusing on life post surgery and hope to progress towards Evie being able to go back to their home in Middlesbrough.
Chloe said: “Post transplant life is scary and brings loads of other issues but it is also exciting and amazing that we have got an offer. Hopefully Evie can process to getting home.
“We have to make progress to get downstairs, which isn’t too far away. She has just been having niggling issues with fluid and dialysis and other bits and bobs. All the issues aren’t abnormal issues, they are all issues we can anticipate post transplant as your body takes such a massive hit and it is such a huge operation for her.
“Her body has to get used to a whole new organ now, so we are kind of progressing slowly but steadily before moving downstairs onto the ward. Hopefully from there that’s when she’ll start progressing to home.
“It is not a cure, your body has to adapt to a new heart and the new heart is used to a whole different set of organs, so there are going to be clashes and there are going to be issues every now and again. The trust staff know how to handle it and have dealt with thousands of transplants.”
During her stay in hospital, Evie has faced numerous hurdles which included suffering a cardiac arrest during emergency surgery and being placed on a ventilator after suffering septic shock towards the end of last year.
Evie is now adjusting to life post-surgery, Chloe said: “She is okay, she isn’t on a ventilator, she is talking but she is down in confidence and a bit worried, scared and anxious.
“All very valid feelings for what she has gone through. I think she will get there, she was like this after the Berlin heart operation, a bit down in the dumps and sad. I think she is in intensive care because that’s where you go after transplant, but she was used to living on the ward with all the nurses who were pretty much her family.
“I think an adult would be pretty down in this situation and confused but she is strong enough to deal with it.”
Chloe said there were a range of emotions after receiving a heart, as you think about what the donor family are going through as well. She added: “It is a very unique experience that not many people will understand unless you have lived it.
“It is a really hard pill to take. These children who have died have not died because of Evie or because of anyone who the organ is going to, it is because of a tragic circumstance and it is trying to think of something beautiful that can come from it.
“Evie getting a heart could be something that will get her home and live life with her family which is a bit of hope for a donor family, I would like to think.”
Chloe said they hope to get Evie home soon, adding: “You forget what life is like at home with all four of us but it is also nice to start daring to dream about that, but keeping ourselves grounded as well in case of any issues.”
