The mother of a "fun-loving" young woman who tragically died from a chronic heart condition has paid tribute to her daughter as her friends prepare to run a half marathon in her memory. Amy Penn, from Newport, died on June 14 last year having suffered from a congenital heart disease since she was born and having undergone multiple surgeries.
Amy's mum Hayley Penn said she and her husband Scott were told at Hayley's 18-week scan that Amy had a heart defect. At the time they thought she had hypoplastic left heart syndrome – a birth defect that affects normal blood flow through the heart. The couple were told Amy have to undergo three stages of operations to improve her quality of life.
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"It was a massive shock," said Hayley. "You think you are the only person in that position but you're not. I'm glad I found out because it meant we were prepared. It gave us a few months to put a plan in place."
Amy was born on August 27, 1999, and, contrary to what doctors had initially thought, was diagnosed with left atrial isomerism with unbalanced AVSD and pulmonary atresia. Her condition meant the left side of Amy's heart hadn't grown and she only had two chambers and Hayley and Scott were told she would have to undergo the Fontan procedure – a three-stage series of operations – or she would not survive beyond a few days.
Amys first surgery was only five days after she was born. "The doctors at the time said her heart was the size of walnut because she was so small," Hayley, 46, recalled. "So to do surgery was unbelievable. It was maybe three or four hours but with all the checks and everything they had to do afterwards it was about six or seven hours before we saw her. We got used to that – we learned that no news wasn't necessarily bad news."
Amy's initial operation was successful and Hayley said her daughter's first five years were "very busy" with regular check-ups. She had her second surgery aged two and her third when she was five. During her third op, which involved connecting the lower body to the circulation after the initial surgeries, Amy had a two-chamber pacemaker fitted.
Despite having undergone three operations by the time she was five Hayley said Amy "lived a normal life", going to primary school and high school and making friends. Despite her limitations Hayley said her daughter was able to do most things without any issue. "She went to festivals and travelled, went to Euro Disney with her friends. She couldn't do contact sports due to her pacemaker, but there was always something else. She did drama, ballet, golf, cricket for a time. She loved reading and photography."
Amy went on to university in Southampton where she studied social policy and criminology. "For university we wanted it to be on the M4 corridor so that if there was an emergency it was maybe only two hours away," Hayley said.
Amy's teenage years and early adulthood were without any major health complications other than some smaller surgeries for embolisation of systemic venous collateral vessels, which were causing her oxygen levels to drop. However during her second year in university she became unwell and had to have surgery again where she had a new pacemaker fitted.
After this point Hayley said her daughter struggled to rebound as she had before. "She became more frail over the last two years. She had an arteriovenous malformation (AVM) in her mouth which would bleed and had to have surgery to remove it."
Amy had to give up her studies and instead got an administration job with a company in Newport SSCL. She often worked even when she felt unwell. "Even when she was aching and couldn't get out of bed she worked anyway," Hayley said. "She even worked the Friday she went back into hospital for the last time. She never wanted to take time off."
Tragically Amy became extremely unwell in May 2021 and was admitted to hospital. Three weeks later on June 14, 2021, she died in hospital with Hayley, Scott, and Amy's younger brother Callum by her side.
Hayley admitted she past year had been difficult for her family but said keeping the positive attitude they held when Amy was alive had helped them cope with their grief. "We've always had a positive outlook regardless of the situation with Amy. When she went into hospital each time it was always: 'Well she'll be out soon'. If we don't carry on that attitude after she is gone then it would have been a lie. You have to continue to be positive.
"Unfortunately you can't turn back the clock. Nothing is going to change that day. There are days when I don't want to be positive but you have no choice. You have to deal with it or crack up – and I'm not going to crack up."
On March 27 a group of Amy's friends – Callum Doughty, Bethan Richards, Georgia Shwartz, and Rose Evans – will be running Cardiff Half Marathon in her memory while raising funds for the British Heart Foundation (BHF), which helped support Amy when she was alive. They have already raised more than £2,000 ahead of the event and you can donate or find out more here.
"We never wrapped Amy in cotton wool. We wanted her to experience life. You only get one and you have to live it," Hayley said. "Amy's friends never looked at her as Amy who had the heart condition, she was just one of the gang. It is nice that they have thought of doing something in her memory and fundraising for BHF as it is a charity that is close all our hearts."
Paying tribute to her daughter Hayley added: "Amy was just so inspirational. She was fun-loving and lived life to the full. She was brave, courageous, heart-warming – she always looked out for others."
She said her daughter had been planning to hold a Daring to Dream ball on September 10 in Cardiff to help raise funds to help young cardiac patients who need support with their health and wellbeing whilst in hospital. You can find more out about that event here.
"For young people who are in hospital long-term it can be hard if you are in an adult ward where everyone is older than you," Hayley said. "It would be great if there were funds for people to come in and keep you company or do activities for younger patients."
Nikki James, BHF Cymru Area fundraising manager, said: “Amy was a truly inspirational young woman who is fondly remembered by everyone who met her at the BHF. She was a member of our Teen Heart and then One Beat groups for many years.
"We are so grateful to her friends and family who are choosing to support our research in memory of Amy. For more than 60 years the public’s generosity has funded BHF research that has turned ideas that once seemed like science fiction into treatments that save lives every day. But millions of people are still waiting for the next breakthrough. We urgently need the public’s support to keep our life-saving research going and to discover the treatments and cures of the future.”
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