A mum from Nottingham is running this year's London Marathon for her daughter who has endured five open heart surgeries – one of which led to a stroke when she was just four-years-old. Jen Evans, 37, is raising money for the British Heart Foundation (BHF) after her daughter Sophie – now aged 13 - was born with a congenital heart condition called hypoplastic left heart syndrome.
It meant the left side of Sophie's heart was underdeveloped and wasn't pumping correctly. Jen and her husband Phil were first told there was something wrong with Sophie's heart during a 20-week screening scan.
Jen, who works as a mental health well-being assistant at a primary school, said: "We hadn't really heard of heart-related issues in children before, so were in a bit of a daze. While we were in shock, the good news was that there were things that could be done to help her, mainly a surgery called the Fontan Procedure which would involve three surgeries over five years."
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Sophie had a procedure just two days after she was born, in November 2009. Surgeons tried to insert a balloon into her aortic valve to help widen it.
Unfortunately, they were unsuccessful and over the next few days Sophie's condition started to deteriorate. At just nine-days-old, specialists determined that she should begin the first step of the Fontan process to try and build her a new, larger aorta.
After five weeks in hospital, Jen and Phil were finally able to bring their little girl home for the first time. However, just eight months later, Sophie was back in hospital for the next step of the Fontan process to create a shunt to improve blood flow to the heart.
It was a success and ten days later Sophie was discharged. She needed to grow and develop before they were able to complete the final stage of the process.
Jen said: "Sophie was due to have the final stage of Fontan surgery when she was four. But she started getting out of breath and her lips and hands kept turning blue as not enough oxygen was flowing around her body. So, doctors decided to go ahead with the procedure earlier than planned."
While the procedure was a success, sadly, a rare complication saw a blood clot travel to Sophie's brain, causing her to have a stroke. "When the doctors told us what had happened, Phil and I cried the whole night," said Jen.
"It was a really difficult time. You never think your four-year-old will have a stroke."
Jen, who is also mum to Charlie, 15, and Alfie, nine, said: "Following her stroke Sophie was distressed a lot and needed physiotherapy on her left side. We had all these worries about what the future would look like for her, but we just had to get on with it and help her as best we could.
"Thankfully, she's recovered well. Looking at Sophie you'd never know she had a stroke, but it's affected her emotional development and she does need additional support." Following the procedure, Sophie's condition continued to improve - until 2018 when surgeons noticed her heart had changed size and wasn't functioning properly.
They discovered she had a leak in her aortic valve which meant she required further surgery. "She has been pretty stable since her operation to fix the leak but may need more surgery in the future to replace her aortic valve," added Jen.
To raise funds for research into heart conditions, Jen is now taking on the iconic TCS London Marathon on April 23 to raise vital funds for the BHF. Before the BHF existed, the majority of babies diagnosed with a severe heart defect in the UK did not survive to their first birthday.
Today, thanks to research, more than eight out of ten survive to adulthood. Jen said: "I really wanted to raise money for the BHF.
"I'm so proud of Sophie and the way she's handled all that she's been through. Her condition is quite specific so developments in heart research could have a huge impact on her life."
Karen McDonnell, BHF senior events manager, said: "We never fail to be inspired by the incredible stories of our supporters, and Jen is no exception. Her daughter Sophie is a remarkable young girl who has overcome so much.
"Every single step our runners take will power science with the potential to beat heart and circulatory disease. We're extremely grateful for Jen’s support and can’t wait to cheer her over the finish line."
To help Jen reach her fundraising target, visit her JustGiving page here.
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