It’s such a weight off our minds knowing that we’d have somewhere to sleep and rest
My husband Thomas and I have been in hospital with our four year old son, Finlay, ever since he was put on the urgent heart transplant list. For over 300 days we have been away from our eldest son, home, friends and family in Belfast.
Three weeks ago though, Finlay received his new heart.
At six months old, we noticed Finlay had a cough. We took him to the doctors, thinking that he would just need an inhaler for something like asthma. We walked away that day finding out that he had an enlarged heart.
Finlay was diagnosed with a heart and muscle disease called restrictive and hypertrophic cardiomyopathy. Finlay had reduced blood flowing through his body because the chambers were stiff and not relaxing after contracting, this was causing him to be breathless. We had no idea just how ill he was.
Finlay would need a heart transplant, it could be a matter of hours, days or months.
We were flown from The Royal Belfast Hospital for Sick Children to Newcastle upon Tyne where Finlay underwent an assessment for a heart transplant. We felt lucky that after this assessment we were told we could take him back home to Northern Ireland and manage his condition on medication for the foreseeable.
Finlay really held his own. For two and a half years we were back home, with just two brief hospital stays. As time went on though we noticed that the signs that his heart was struggling were there more. In August 2020 we went for another assessment and that was when Finlay was listed on the urgent transplant list. Two months later we were admitted to Belfast hospital and since have been waiting for a donor heart to become available.
Although from October we were in hospital we were grateful that have been able to spend most of this time in Belfast. Having a child waiting for a heart transplant has a massive impact on the entire family. Being in Belfast meant that Finlay’s older brother, Alfie, could see his daddy most nights and I could see him on Fridays. This has not been possible while we have been in Newcastle due to the coronavirus so Alfie hasn’t seen that much of us in ten months.
Finlay seemed to be coping well but in June 2021 he had a cardiac arrest. A temporary pacemaker was fitted for him in Belfast but we needed to get him over to England urgently. With no beds available in Newcastle, we went via Glasgow first and eventually ended up in Newcastle. A permanent pacemaker was fitted, and when Finlay built up his strength we could fly home and wait there.
This wasn’t our first trip to Newcastle and although we were far away from home we had the comfort of knowing we had somewhere to stay, Scott House run by The Sick Children’s Trust. We were referred to Scott House by the team in Belfast and it has meant we can always be close by to Finlay. Many times when we have been in Newcastle, Finlay has been on the Paediatric Intensive Care Unit or the High Dependency Unit and we can’t sleep by his side. Scott House gives us a place to stay, which means we don’t have to worry about hotels and taxis.
We made the flight home in July. Two days later we were back in Newcastle. I hadn’t even unpacked my suitcase properly and had just hung some washing on the line when my phone started ringing.
A heart had become available. I couldn’t believe it. Thomas and I didn’t know how to feel and couldn’t tell you how we felt. We’d known ever since that first doctor’s appointment that Finlay needed a new heart and have been waiting so long… we’ve spent a long time in hospital that it’s all that we’ve thought about.
Heading back to Newcastle, we knew we didn’t have to pack much because we would be staying at Scott House again. It’s such a weight off our minds knowing that we’d have somewhere to sleep and rest. With all the facilities at Scott House too it meant we didn’t have to worry about what to take with us. We knew there were laundry rooms at Scott House where we could wash whatever we brought and we knew we could use it as a base for the weeks to come.
As Finlay went down for his heart transplant, we were prepared to not see him again for another nine hours. We decided to keep ourselves busy, settle into Scott House and go to the supermarket to buy food. We hadn’t slept at all the night before and our phones kept ringing as everyone back home got in touch. Good news travels fast in our town!
Six hours later Finlay was out of his surgery. As we were at Scott House we could just walk over to the ward which took just a few minutes. We weren’t worrying about rushing there from a place far away, we could just be there for our son.
Finlay’s heart is doing well but he has had some complications as a result of his body adapting to it. His kidneys are struggling and he has also contracted necrotizing enterocolitis (NEC), a serious infection of the bowel. He’s amazing though and remains strong. He’s been nil by mouth for ten days and is just talking about all the food he wants. It’s not ideal for a four year old but he’s taking it in his stride – I wouldn’t be as pleasant as Finlay if I couldn’t eat or drink for all that time!
We are now a step closer to home, but there are a few more steps we have to climb before we get to go home. Hopefully, soon, Finlay will join us in the transplant flat at Scott House. It’s a separate area away from the rest of the ‘Home from Home’ with its own kitchen, living room, bathroom and bedrooms. It’s a chance for us to all be together before going home with the security of knowing the hospital is right there if we need it. We can get used to Finlay’s medication, caring for him and spend some time with him outside of the hospital. We can’t wait to have him over with us as we haven’t been around him, just the two of us, without any nurses or doctors for ten months. To be able to do this before we go home is a lifeline. Scott House is a lifeline. Simply being able to get showered and eat something so you can take on the day ahead makes a huge difference.
Finlay understands that he has a poorly heart and that he now has a new one. Over the last year he’s become more aware as he has spent more time in hospital. As he can’t really tell us how he feels we are looking forward to seeing all the new things he can do.
People don’t realise that a child with a poorly heart, that’s waiting for a new one, can’t do all the things that other children can do. Finlay has never been on a trampoline or a bouncy castle, we’ve had to keep him out of soft-play and the swimming pool and he’s never been on a bike. He can do all of this now because he has a new heart, and someone made that decision about their own child.
Before Finlay, all I knew about organ donation was when they asked me on my driving license whether I would be willing to donate my own organs and I said yes. I didn’t think about children needing transplants. So many people now in our town have said yes to organ donation after hearing about Finlay which is amazing. It’s important to talk about it and make your decision known so that more people can be helped.
Max's family stayed with us four years ago when he was waiting eight months for a heart transplant. Since then they have inspired a huge change in the laws around organ donation in England. Read how they have been getting on since leaving Scott House
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