EXCLUSIVE: Ten-year-old Evie Gore had to be brought back to life after her heart suddenly stopped, but has just competed in her first ever school sports day and competed in the British Transplant Games
This is the brave schoolgirl whose heart stopped beating for 31 MINUTES… then was saved by space age technology developed by Nasa to explore Mars.
Evie Gore, ten, was brought back to life twice by doctors after her heart suddenly stopped, and eventually doctors were able to find her a new heart.
But they had to make a hole in-between her top two heart chambers to help the blood flow more easily around her body.
That hole was closed in September by a special device, developed by Nasa and used to explore Mars, which now allows her to live a normal life.
Evie, who lives in the Forest of Dean, Gloucestershire, with mum Sarah, 38, and dad Simon, 37, an electrical engineer, has just competed in her first ever school sports day and competed in the British Transplant Games in Oxford last month.
She is also able to ride a horse for the first time, and has taken part in a stage production in the Cotswolds.
Sarah, a nursery worker, said: “To look at her now, it’s hard to believe that she has been through so much as she’s doing amazingly well.
“All the medical science that has gone in to saving her life is incredible. We can’t thank the doctors enough for what they have done for Evie.”
Evie was just five when she suffered a fit at home and fell to the floor in December 2020.
Sarah said: “It came out of the blue. She had been complaining for stomach pain intermittently for a few months, but she’d had her stomach scanned and it had shown nothing. Up until then she’s been a normal bouncy child, full of energy.
“When she suffered the fit at home we had the paramedics come out to her, who checked her over. But the next day she still wasn’t right, so we took her to hospital and they scanned her heart and said it didn’t look right.”
Whilst Evie was in hospital she had her first cardiac arrest, where her heart stopped beating for 14 minutes.
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Sarah said: “It was terrifying. We didn’t know what was happening. Luckily we were in hospital when it happened, and eventually the doctors managed to get her heart started again, but it seemed like a lifetime.”
Whilst Evie was in still in hospital she had another cardiac arrest, this time lasting for 17 minutes before doctors were able to resuscitate her.
She was diagnosed with both restrictive and hypertrophic cardiomyopathy – two separate conditions – which causes both enlargement and stiffness of the central wall of the heart muscle, preventing the signals triggering the heart to beat correctly.
Sarah said: “The doctors at Bristol Hospital were appealing to hospitals in the USA for help, as they had never seen this happen before in a child of Evie’s age. They gave her five years to live at best without a heart transplant, as her heart had been so badly damaged. We later found out that the condition had been caused by a gene mutation.”
Evie was put on the transplant list to wait for a new heart, and the family just had to pray that a donor would be found in time.
Sarah said: “Evie’s life was very restrictive, as with restrictive cardiomyopathy, the heart can deteriorate suddenly very quickly. She wasn’t allowed to go on a trampoline or a bouncy castle, or anything that involved her jumping on the spot. She had to be very careful.”
The family got their first call from Great Ormond street to say a heart had been found for her just weeks later in September 2021, but it was found to be unsuitable for transplant.
Sarah said: “It was very traumatic as we thought she was getting her new heart, and then to be told she wasn’t, was devastating.”
But they got a second call in April 2022, and this time the transplant went ahead and was a success. Because of the pressure on her lungs from her heart, they also had to create a hole between the top two chambers of her heart, to allow the blood to flow more easily.
Sarah said: “She made a great recovery, and we are so thankful to that gift of life from her donor. Evie has been able to live her life thanks to that amazing gift, and we will honour and treasure it for always.
“We knew that for Evie to get her gift of life, a family had to lose a loved one, and we never stop thinking about that loss.”
In September Evie underwent an operation to close that hole, using an ASD occluder device. It is made of Nitinol – an alloy which was used to create devices called rover wheels that have been used to explore the planet Mars that can absorb shocks and navigate rough terrain.
The device is delivered via a catheter inserted through a small incision, often in the groin, and then expanded to seal the opening. The heart tissue naturally grows over it to permanently close the defect. It’s a hugely successful procedure that has largely replaced surgery for ASD’’s.
She has since then come on in leaps and bounds. Sarah added: “She can live a full life now, just like any other girl her age. She did her first sports day at school last month, and we were so proud of her. She can ride a horse for the first time, and goes riding every week. And she took part in a stage production last month too, at the Cotswolds Playhouse. She sang her heart out, and loved every minute.
“She’s grasping her new chance at life with both hands and making the most of it.”