Our baby's heart swelled to cover most of her chest - doctors said her chances were slim

Our baby's heart swelled to cover most of her chest - doctors said her chances were slim Ada-Mai was healthy before she suddenly stopped feeding A couple's “tiny” five-month-old baby’s heart swelled to “cover most of her chest”, with doctors saying she might not survive. They've now described their daughter as a “fighter” after she defied the odds. Zoe and Steven Taylor’s daughter Ada-Mai, now two, from Bradford, West Yorkshire, was healthy until she suddenly stopped feeding and went “completely pale and lifeless” one evening. She was seen by various doctors and in hospital it was confirmed “her heart was massively enlarged”, to the point it was covering most of her chest and was not pumping blood around her body properly. Two weeks of investigations, X-rays and tests led doctors to discover she had cardiomyopathy, a disease of the heart muscle, and Zoe, 36, and Steven, 40, were told her chances of survival were slim. To doctors’ amazement, Ada-Mai slowly began to recover and, after six weeks in hospital, she was able to return home, where the couple had to administer nine different medications, fluids and injections every two to three hours. Now, Ada-Mai is almost a celebrity at local hospitals, as she has exceeded doctors’ expectations and is no longer on medication and she said she was feeling “good”. “We know we’ve still got a long road ahead, but we’re so proud of her,” Steven said. “She’s a miracle, really.” When Ada-Mai was born in March 2024, Zoe and Steven said “everything seemed perfect”. They said she was “not poorly once” in the weeks afterwards but, at around five months old, she suddenly stopped feeding and seemed “tired all the time”. “We thought maybe she was just under the weather and we tried everything we could to encourage her (to feed),” Steven said. “After a day or so with no change, we took her to the doctor.” The couple were told to take Ada-Mai to Bradford Royal Infirmary (BRI) in case she needed fluids. At the hospital, doctors checked her over and said her heart rate was high – around 185 beats per minute (bpm) – and they kept her in overnight. According to the NHS, the normal range for a baby’s heartbeat is between 110 and 160bpm. Ada-Mai was discharged and taken home the next day, but her heart rate remained high, causing concern for Zoe and Steven. Steven continued: “That evening, while I was making tea, Zoe started calling for me. Ada-Mai had gone floppy in her arms, completely pale and lifeless, so we rang for help straight away. “The ambulance crew got us back to BRI quickly, where a scan revealed a shadow on her heart. Another scan confirmed that her heart was massively enlarged. It had grown so big it was pressing against her tiny chest.” Zoe added: “It was awful, it was scary. I didn’t realise how serious it was at first.” At BRI, after further investigations, the couple were told to “prepare (themselves)” for the worst and a specialist transport team transferred Ada-Mai to Leeds Children’s Hospital. “They took her in one of those mobile intensive care units. You never imagine you’ll see your baby in something like that,” Steven said. Ada-Mai spent three weeks in intensive care, needed two blood transfusions, was resuscitated twice and was “hooked up to all the machines”. At one point, Zoe and Steven said doctors had to feed a tube to administer medication through her foot and groin because she was too weak and they “couldn’t find any veins”. “They told us she might not make it,” Steven said. “I’ll never forget sitting in those meetings, being told the odds weren’t in her favour.” After two weeks of testing, doctors discovered the cause and confirmed Ada-Mai had cardiomyopathy, triggered by a parvovirus infection. Parvovirus B19 is a viral infection, also known as slapped cheek syndrome, and it is most common in children and usually causes a bright red rash on the cheeks, the NHS says. The couple said the diagnosis meant Ada-Mai’s heart had enlarged to the point it was “floppy” and it was not pumping blood around the body properly – instead, it was “just rocking”. Doctors explained her heart should have been the size of a fist, but it was “covering most of her chest” and she had a “very slim chance of surviving”. “It was terrifying… and it broke me,” Steven said. “We were told there were four possible outcomes: she might not survive, she might need a heart transplant, she might live with a lifelong condition or, and this was the least likely, she might recover fully.” While at Leeds Children’s Hospital, the couple stayed at Eckersley House, a “Home from Home” run by The Sick Children’s Trust charity, and said it was their “sanctuary”. The Sick Children’s Trust and Bradford Hospitals Charity are working together to raise £3 million to build a new five-bedroom “Home from Home”, a place for families to stay free of charge, beside the Neonatal Intensive Care Unit at BRI. Construction for the site has started, with an opening date set for spring 2027, and the charity said the home is expected to support more than 500 families every year. Zoe said: “They said we can stay as long as we need to. They had everything there that you needed, it just felt like you were at home.” Steven added: “I honestly don’t know what we’d have done without it… They looked after us in ways we didn’t even know we needed.” The couple said they were also supported by the Children’s Heart Surgery Fund and wanted to thank all the staff at the hospitals. Ada-Mai kept fighting and, although there were some complications, she slowly regained her strength and started to show improvements. Eventually, her heart function started to return to normal and Steven said “doctors couldn’t believe it”. After six weeks in hospital, the family were discharged – and although they were nervous to leave, as they had to learn how to administer nine medications for Ada-Mai, they were “excited” to return home. Zoe describes her daughter as “amazing” and said that even though she can be “naughty” at times and keeps them “on (their) toes”, she has been incredibly “brave”. “Even now, when we go back for check-ups, the nurses and consultants remember her,” Steven said. “She’s become well-known across the Leeds and Bradford hospitals. Everyone’s amazed at how far she’s come.” While Ada-Mai’s risk of infection remains high, Zoe and Steven said she is doing well and enjoying nursery, is no longer on medication and her heart has returned to a normal size. The couple want to support The Sick Children’s Trust’s campaign for the new “Home from Home” and they want to raise more awareness of cardiomyopathy to help other parents. Speaking about Ada-Mai’s journey, Zoe added: “She’s just done amazingly well. I think she’s a fighter. “She’s tough as well – if she falls or anything, she doesn’t cry. We’re incredibly proud of her.” To find out more about The Sick Children’s Trust charity and its new “Home from Home” in Bradford, visit www.sickchildrenstrust.org/fundraise/bradfordappeal