Billy’s birth and early diagnosis
Charlotte: I have a bicornuate uterus, which makes it a slightly different shape and increases the chances of having a premature birth. As a
result, we had more regular scans at Harrogate Hospital as well as one at Leeds Children’s Hospital as they noticed that our son, Billy’s, femur was growing outside of the centile and they wanted to check his growth. Everything seemed fine though with our healthy baby boy. That was until my waters broke early. We rushed back to Harrogate Hospital who checked Billy’s heart rate before telling us that he was in distress and needed to be delivered right away. It was already planned that he would be delivered by caesarean section, but this still came as a big shock. We had nothing with us and within 50 minutes of arriving at the hospital I was taken into theatre, with Billy being born four weeks premature on 30 October 2023, weighing 4lb 8oz.
Joe: Billy wasn’t breathing when he was born, which threw us into a whirlwind of a scenario. All the atmosphere in the room changed from being jolly and excited to whispers in the corner and more medical staff arriving to assess Billy. They got him breathing and placed him in an incubator while the doctors began talks with specialist hospitals in Sheffield, Bradford and Leeds. Billy would need to be transferred to one of them for an echocardiogram and his onward treatment. We had no idea where in country he was going to end up which was scary. Charlotte hadn’t even seen him yet as she was recovering from the operation and needed to be observed.
“At the ‘Home from Home’ we had everything we needed to look after ourselves while never being more than a short walk from Billy’s incubator. It was absolutely fantastic.”
Charlotte: It was three and half hours later when I was finally able to go and see Billy. It was distressing to see him covered in wires with so many medical staff around his incubator. A bed was sorted at Leeds Children’s Hospital and Billy made his way over with EMBRACE, the specialist ambulance service with Joe. I had to remain at Harrogate, which was incredibly tough, but was transferred a couple of hours later.
Joe: In Leeds it was confirmed that Billy had a problem with his pulmonary heart valve, limiting the amount of blood he was able to pump around his body. Having had so many extra scans we thought something like this would have been picked up, but it’s one of the hardest conditions to diagnose before birth so we were completely unprepared. The doctors attempted to close the hole in Billy’s ventricular septum. When this didn’t work he went for a full cardiac scan, being diagnosed with pulmonary atresia with an intact ventricular septum. This was a much larger problem which would require open heart surgery to correct.
Support from The Sick Children’s Trust
Everything happened so quickly. We’d suddenly been thrown into this completely different world in the intensive care unit, a difficult environment where so many poorly babies, including our own, are seriously ill. For the first two nights I slept on the ward next to Charlotte as there was no way I could travel back to Harrogate. However, with Charlotte soon to be discharged, this wasn’t a long-term solution. It was then that a cardiac nurse mentioned The Sick Children’s Trust and Eckersley House. We knew nothing about the charity, but I made my way over and spoke to the House Manager, Jane, who gave us a room where we could stay, free of charge. At the ‘Home from Home’ we had everything we needed to look after ourselves while never being more than a short walk from Billy’s incubator. It was absolutely fantastic.
Charlotte: As an expressing mother, Eckersley House was invaluable. I could walk over in the early hours of the morning to give Billy the milk he needed. It was so comforting being just across the road rather than 40 minutes away in Harrogate. Still recovering from the c-section, I was sitting in this uncomfortable chair trying to get skin-to-skin contact with my baby, who was covered in wires. It was extremely tough. As parents you always stay with your baby as long as possible, but you’re exhausted and need some rest, which is why Eckersley House was so important.
After several months of procedures, Billy had his first open heart surgery on 23 November 2023. The procedure involved placing a small plastic tube that mimics the function of the pulmonary artery. Billy was in recovery throughout the festive period, meaning he spent his first Christmas at the hospital. Obviously, it was nothing like how we imagined his first Christmas being. For much of December we switched off from the outside world, just focussing on Billy. I was dreading Christmas Day. It is supposed to be a big family celebration, not spent alone in hospital. It was sad for us and our families that we couldn’t be together. When we arrived on the ward on Christmas Day the medical staff had covered Billy’s bed with presents, with even more at Eckersley House, which was so lovely. All I wanted for Christmas was the three of us to be together. Because of Eckersley House, we could be.
Billy’s second surgery and further treatment
We returned home after four months in hospital, with the plan being that Billy would have a second open heart surgery in October 2024. This would remove the plastic tube he had outgrown, replacing it with his own tissue. As he grows, it will grow with him. However, in June 2024 Billy seemed to be having a problem with his medication. A scan revealed that he needed his second open heart surgery immediately. Once again, an ambulance took us from Harrogate to Leeds, but at least we felt a little more prepared this time. We knew the hospital well and we 
knew that Eckersley House was there to support us.
Joe: Once Billy was out of danger and settled, we went to see Jane who gave us a warm welcome and another room, again keeping us close to Billy. It was so comforting to know the ‘Home from Home’ was there for us, taking away all the stress around where we would stay. We’d been thrown into uncertainty again, but Eckersley House was a place we could rely on. Several other adjustments were made during Billy’s surgery, helping with his blood pressure and the volume of blood that can enter his heart at any one time.
Since his second surgery, Billy has been doing well. Dr. Carin Van Doorn and her team at Leeds Children’s Hospital have been incredible. They’re superhuman, having twice saved his life. We’ll be enterally grateful to them. Billy will need further heart surgeries to maintain the work that has been done to this point, but hopefully with careful monitoring from Leeds Children’s Hospital these will be few and far between. He’s been poorly recently so we’re still taking it day by day. If he gets better, we’ll be looking forward to having Christmas with Charlotte’s parents and seeing as many family members as possible. Throughout the day though our thoughts will be with the families spending Christmas in Eckersley House and all the children in hospital. We know it’s a lot to go through, and we’ll be wishing them all the best.
Joe and Charlotte, Billy’s parents
