When Leigha-Mae Stones needed open heart surgery at Leeds General Infirmary (LGI), mum Stacey Slater and dad Adam Stones felt that expensive hotel stays or lengthy commutes from their hometown of Chesterfield, some 50 miles away, were inevitable. Thankfully, The Sick Children’s Trust’s ‘Home from Home’ Eckersley House supported them at their time of need. Adam, who works for the East Midlands Chamber of Commerce as a project manager, tells us their story.
We knew before she was born in 2015 that Leigha-Mae had some big challenges ahead of her. The 20-week scan at Chesterfield Royal Hospital revealed issues with her heart, which resulted in referral to Leeds General Infirmary (LGI) where they diagnosed the condition. Leigha had a Ventricular Septal Defect, commonly known as a hole in the heart. She also well as Congenital Corrected Transposition of the Great Arteries – a rare defect in which the heart’s lower two pumping chambers, the ventricles, are reversed in their positions – and Pulmonary Stenosis, which obstructs blood flow. This meant that mum Stacey would need regular scans throughout her pregnancy to monitor Leigha’s development. Additionally, an induced labour was scheduled at LGI to ensure that Leigha would have the best possible chance of a safe arrival.
However, as we’ve often found over the past six or seven years, it was never going to be straight-forward. Leigha decided to come early, with Stacey being rushed to Chesterfield where she was born before being immediately transferred to LGI. It was incredibly stressful, but we were pleased to find out that she had been born in a far better state of health than we expected from the original prognosis, which was a huge relief. However, we knew full well that major surgery was still going to be needed not too far down the road.
Leigha’s first major surgery came in May 2017, when she was two years old. She was fitted with a shunt, a small tube that allows more blood to be circulated around the body, in Leeds. We were only away for four nights, staying on the LGI’s Brotherton Wing, which is run by the Children’s Heart Surgery Fund (CHSF). That support was so great, but it did get us wondering about what we would do when the major surgery inevitably came, especially as Leigha would be in hospital for an unknown length of time.
In August 2021, the day of Leigha’s open-heart surgery finally arrived. I still remember the exact time that she was wheeled through the theatre doors: 8.37am. It proved to be a long and harrowing day. It was 11 o’clock at night when we finally got into to see her and spend some time with her on the intensive care unit. She had made it through over 13 hours of surgery, and we were so relieved to finally see her as we had been going out of our minds with worry.
In terms of Leigha’s recovery, it was a case of how long is a piece of string. It was so hard to say, we had no idea how long it would take before she would eventually be discharged. We were desperate to stay as close to Leigha as possible but were anxious about the thought of travelling daily all the way from Chesterfield or the worrying costs of staying at a hotel for weeks on end, which would have had a terrible financial impact on both of us.
After a couple of days back on the Brotherton Wing, it was The Sick Children’s Trust who came to our rescue. We were given a room at their Eckersley House ‘Home from Home’, right next door to Leigha’s ward, which was amazing. The home was second to none and the staff, led by House Manager Jane, were so accommodating, doing everything they could to support us. Even the COVID restrictions were handled perfectly, never putting us out or making things more difficult than they needed to be.
In many ways Leigha’s recovery was very quick, but there were many complications. She suffered a collapsed lung on two occasions, both times resulting in trips back into the operating theatre. But Leigha is a real fighter and was soon up and on her feet. I’d still be lying down now if I’d have been through what she did.
Eckersley House blew us both away, to be honest. Leigha’s mum and I are not actually together, so we took it in turns to use the room. If either of us had paid for a room in a hotel, we wouldn’t have been guaranteed a place as nice as we got. It was worth its weight in gold in so many ways, especially when I managed to get a photo of Leigha waving at me through her window on the ward from our room at Eckersley House. She thought it was fantastic!
After being discharged on 3 October, Leigha continued her recovery at home in Chesterfield, much to the delight of her older sister, Macey, who had been staying with grandparents. I’m pleased to say that a month later, she went back to Newbold Church Primary School. Leigha’s mum phoned me in tears, telling me one of the kids in the classroom spotted them arriving and shouted ‘Leigha’s here!’ at the top of his voice. They all ran out to see her, throwing their arms around her. It brought a tear to my eye as well, although I was in hospital myself, having ended up in intensive care with COVID. It’s fair to say that it has been a fairly turbulent few months!
Six months after being discharged, I’m happy to say that Leigha is going from strength to strength, a happy six-year-old who is loving life and getting stronger all the time. We’ll never forget how wonderful it was to be so close to Leigha thanks to The Sick Children’s Trust and the priceless resource that is Eckersley House.
Adam Stones, Leigha-Mae’s dad