As a family, we spent a year of our lives living in a place called Rainbow House as we waited for a donor heart to become available for our daughter, Esme.
When Esme was just a few weeks old, it was discovered she had a heart murmur. Her dad, Kevin, and I were told initially not to worry, but it soon became clear it was something more serious. Esme had a severe heart condition which meant blood wasn’t being pumped around her body properly. From that moment, we were regulars at the Royal Brompton Hospital, London, where they tried to help our little girl’s heart get better.
On the outside, Esme looked the picture of health. It was almost as if her body had adapted to the strain it was under, which in some ways made it even harder for us to realise just how poorly she was.
Fast forward two years, we had been at the Royal Brompton Hospital for eight weeks. Along with our son Kelyn, who was just a few months old at this point, we moved into old student accommodation while medics did whatever they could to help get Esme’s heart to work. Nothing was helping, the decision finally came to transfer Esme to GOSH for a heart transplant assessment. She was due to come back to the Royal Brompton Hospital, but was really struggling. It was too risky. This was the point Rainbow House, run by The Sick Children’s Trust, became a ‘Home from Home’ to us for the best part of a year. We live two hours away in Reading, but we were able to stay five minutes from the ward. London is one of the most expensive cities in the world, but The Sick Children’s Trust meant we didn’t have to worry about where to stay.
As Esme’s name went down on the urgent heart transplant list, I sat and held my breath. We were facing a wait of anywhere from six months to a year for a donor heart. All I could do was sit and wait.
There is so much more to finding a match than you realise. It’s a complicated and often long process. It’s not just the wait that is the hard part. Esme was on a Berlin heart, which essentially takes over the job of the heart by pumping blood around the body, for ten months. It restricts you as to where you can physically go – you are confined to the hospital.
If it wasn’t for Rainbow House, Kevin and I would’ve had to split ourselves between home and London. Esme couldn’t leave GOSH and at the time Kelyn was just six months old. I had two babies that I was breastfeeding and needed to be there for both of them. Rainbow House offered us a family room where Esme’s brother could stay, and on the weekends and holidays her two sisters and older brother would come to visit. Esme adores her brothers and sisters and would’ve felt so isolated and lonely without them. With thanks for The Sick Children’s Trust, she didn’t feel like that because they gave us a place to stay.
Put simply, The Sick Children’s Trust gave us one less thing to worry about. As parents, one of us was always there to put Esme to bed and the other Kelyn. We could keep our family together, making sure we had quality time with all of our children. We would wake up at 7:30am, have breakfast in the dining room and head over to the ward for the day. Sometimes the hospital would get too much. Some days it was disheartening hearing that another child had received a heart and you were still waiting. Yet at the same time, you were elated for them. It’s emotionally draining and challenging. At certain points you need to just get away. Rainbow House was my get away. I would take Kelyn over for food, or just to play, taking five minutes out. Not only that, Louise and Tina who look after Rainbow House were always there with a friendly ear to listen. Their support was invaluable. You’re away from your family, your friends… sometimes you need someone that will just take five minutes out of their day to listen to your worries or frustrations, which they did.
Kelyn had most of his first moments at Rainbow House too. We got to see him crawl for the first time, walk for the first time. Without the support The Sick Children’s Trust gave us, we would’ve missed many of his first moments as well as key moments in Esme’s life.
Every day of those eleven and a half months felt long. Every day we’d wonder, will today be the day? Eventually that day came.
This was by far the scariest part of Esme’s journey. In her time at GOSH, she had touch and go moments. Every day there was something going on. We were constantly on tenterhooks. But we were lucky. Esme received a donor heart and two weeks post-transplant we were moving all our things back home. We were no longer ten minutes from the hospital, we were back home in Reading which was daunting at first, but we’ve not let the nerves or anything hold us back though.
We make sure every day is as perfect as it possibly can be, making sure Esme lives her best life.
Esme briefly started reception in June, but there was chicken pox going around the school so she only did six weeks in the end. So we’re currently sizing up her school uniform for her to go back to reception in September and we’re all very much looking forward to what the future holds.
Organ Donation Week 2023: After suffering heart failure last year aged one, Amelia Bolter has been a patient at Great Ormond Street Hospital since October 2022, waiting for a donor heart to become available. Amelia's mum Jodie - who arrived at Guilford Street House heavily pregnant but now has eight-month-old Blossom in tow - shares their story.
As part of NHS Organ Donation Week 2023, we spoke with mum of eight Emma Austin from Shrewsbury, who we supported at our Scott House 'Home from Home' while her 13-year-old daughter Olivia underwent a heart transplant at Newcastle's Freeman Hospital. Emma describes the donor heart as “an incredible gift” that has provided Olivia with the chance of a normal life after a decade of struggle.
Organ Donation Week 2023: Following his daughter Beatrix's long awaited heart transplant in June, dad Terry Archbold brings us up to speed on her journey and his ongoing desire to raise awareness about child organ donation.
Every year we help families by giving them somewhere to stay near their seriously ill child’s hospital bedside. Sign up to receive our email newsletters to stay up to date with how your support is helping to keep families together.