Scott House helped us as a family in ways we never even thought was possible
When Declan was six weeks old, our family doctor detected a heart murmur and referred us to Newcastle’s Freeman Hospital. He had regular appointments to monitor the murmur, but at four months old – while I was on a 6 months deployment as a Leading Hand Communications Specialist with The First Mine Countermeasures Battle Staff embarked on Royal Fleet Auxiliary Ship (RFA) Cardigan Bay in the Persian Gulf – we found out it wasn’t a murmur at all. Declan had a 9mm hole in his heart. As any parents would be, we were shocked and worried to learn of the condition. But we felt reassured by the advice that Declan wouldn’t be affected by it at this stage and could lead a normal life. We clung to the hope that the hole would close on its own.
The hole in Declan’s heart needed to be monitored regularly by his doctors, and at every appointment we hoped that the hole had closed, but it hadn’t. In fact on my return from the Gulf, when Declan was one, the hole had grown to 14mm.
At first, it seemed that he would be able to have a device closure operation to fix his tiny heart, but he was underweight. It wasn’t until 18 months later that he was big enough for the operation. Getting this far felt like it had been an impossible task, but when Nicola called me on board HMS Ocean to tell me the good news, it felt like our son finally had a chance at getting better.
But this joyous feeling didn’t last for long, as the following day Nicola received a call to say that Declan wasn’t suitable for the device closure operation. We were devastated – we’d felt like we’d reached a milestone but in fact it was another hurdle to overcome.
A week later, after an urgent call from Nicola to get me back home from my deployment, we were sat in Dr Murtuza office. Dr Murtuza was the Consultant Paediatric Cardiac Surgeon at Freeman Hospital and he was the one who delivered the horrendous news that Declan needed open heart surgery to save his life. Nicola broke down and had to leave the room as we were told about the possible risks involved.
We asked whether the operation could be delayed as I was due on deployment within weeks, but we were told there was no option. It had to be now within the next couple of weeks. We were blown away, shocked and dazed – but Declan was unfazed. In fact that day we were shown around the paediatric intensive care unit (PICU) where Declan would be, and he loved the attention! By meeting the team on PICU, some of our worries were eased – they were totally amazing the moment we were introduced. And it was at this point that a support nurse told us that we would be given a room at a place called Scott House, run by The Sick Children’s Trust. We cannot put into words how relieved we were to hear that there was somewhere for us to stay, so we could be by Declan’s side at all times.
The date for the heart surgery was set, and it wasn’t months away – it was just a fortnight so arrangements were made and I did not deploy with HMS Ocean on the 19th Sept 2016. The Royal Navy were extremely supportive. The days leading up to his operation dragged. And on the day of his surgery, we feared for Declan. We can’t begin to describe what we were going through. It was as if it was someone else’s life that we were just walking through. We almost didn’t feel human.
After Declan had gone into surgery we returned to the ward to wait for news. Shortly after though, two lovely ladies came to meet us and take us to Scott House. As soon as we walked through the doors, we were amazed. Scott House simply blew us away, it was so homely. We were told about what The Sick Children’s Trust does and why Scott House is there for families with children on the heat unit and we were moved.
Knowing we would be supported by Scott House for the duration of Declan’s treatment immediately eased some of the worries we had. Even though we don’t live far from Freeman Hospital, we couldn’t leave our son when he was at his most vulnerable. We were never separated from our son, we never had to leave him. This is something so important and essential for any parent who has a seriously ill child in hospital.
Five hours later, Declan was out of theatre and we were relieved to hear everything had gone well. We spent the next few days on PICU and the ward. Declan’s recovery was so much better than we expected, and we believe that because we could be with him all the time, he felt reassured. And it spurred him on to get stronger.
Nicola or I were always with Declan, we took it turns to pop back over to Scott House for a shower and much needed nap! Scott House helped us as a family in ways we never even thought was possible. Nicola’s cousin and her partner – Tracey and Gary – were taking care of Declan’s younger brother, Locklan, but would bring him over to Scott House so we could still give him much needed cuddles. It also meant that Locklan could go and visit his brother, which lifted Declan’s spirits significantly – it was clear how much they missed each other. Pauline and Tom, Nicola’s mum and Dad who had been there every step of the way for us while I had been deployed, could also spend time in Scott House when things got too much on the ward. They could go over and make a cup of tea, take some time out and come back to see their much-loved grandson.
Scott House took away all the additional everyday stresses and worries. It enabled us to just forget about the real world and focus on what was going on with Declan and that was more important than anything else in the world.
Declan surprised us all with how fast he recovered – he was out of hospital after five nights. If you met him today, you’d never know what he’s been through. He’s like a new little boy. He’s no longer tired or breathless and has more energy than ever! This is all thanks to the amazing team at Freeman Hospital, we cannot thank them enough. The difference in Declan is truly amazing.
We are so grateful to the team at Freeman Hospital and Scott House for giving us so much support during this time. When Declan was recovering on PICU, we spoke to many families who had children there too, fighting for their lives, and many families who were being supported by Scott House. We realised just how lucky we were. And because of that we are fundraising for the both The Sick Children’s Trust and the Children’s Heart Unit Fund (CHUF).
Having supported countless families with children needing transplants over the past four decades, we remain determined to ensure that the subject of child organ donation continues to be discussed. In support of NHS's Organ Donation Week 2023, a trio of families have kindly shared their transplant stories.
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.
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