Though my daughter Evie is only five years old, she’s been in and out of hospital more than anyone should in a lifetime. Every time we weren’t sure whether this was the time we were going to lose her. During her most significant lifesaving operation, The Sick Children’s Trust was there to help me and my family, and I don’t know what we would have done without the charity’s support.
By the time Evie was four years old, she’d already undergone several open heart surgeries. She was due to have a third surgery, but after a routine catheter procedure, we were devastated to learn she had a blocked pulmonary artery and wasn’t suitable for the final stage of a palliative operation that would prolong her life. After much deliberation at Alder Hey Children’s Hospital, our local, a second opinion from Freeman Hospital in Newcastle-upon-Tyne was sought. A specialist cardiothoracic surgeon from the hospital stepped in and told us he thought he could perform the surgery, although it was going to be high risk because Evie’s case was quite unusual.
We knew we had to take the chance and headed to Newcastle, over 100 miles from home, so Evie could undergo an operation that hadn’t been performed on a child in Evie’s situation before. In the days before her operation and during this incredibly stressful time we stayed in Scott House, a ‘Home from Home’ run by The Sick Children’s Trust. It allowed us to be by Evie’s side when she needed us most and for that we will be forever grateful.
Evie’s story began when, at just 32 weeks pregnant, my wife Claire and I were told that our baby had a congenital heart condition and there was a 50/50 chance she would be born with Down’s syndrome. Previous screening had shown a low risk, only a one in 1,250 chance that our baby would have Down’s syndrome. But when Evie arrived, at Liverpool Women’s Hospital, it became clear that our beautiful baby girl was the one in 1,250. She did have Down’s syndrome. In addition to this, she also had two heart problems - a coarctation of the aorta, meaning that her aorta was narrower than normal, and complete AVSD (atrioventricular septal defect). Within 24 hours, she was transferred to the cardiac ward at Alder Hey Children’s Hospital for specialist treatment. We were distraught as the doctors there told us Evie would need lifesaving surgery at only five days old – although we’d discussed this possibility at our 32 week scan, nothing could’ve prepared us for this news.
The operation was meant to repair the coarctation of the aorta, but devastatingly Evie did not respond well to the surgery and the team were unable to take her off the bypass machine. We were told that Evie was unlikely to survive but that they were trying everything they could to give our baby the chance of life. We felt hopeless and unable to do anything to help our girl except trust the surgeons and theatre team. Amazingly, in an attempt to save her life, the doctors performed an operation called the Norwood procedure. This is the first operation in a three-stage palliative surgery and is normally done on babies with hypoplastic left heart syndrome, but Evie was a unique case and doctors decided she was suitable for the operation.
Although the first surgery went well, Evie spent 11 weeks in hospital and had a somewhat rocky road to recovery. At eight months old she had the second stage of the surgery (Cavo pulmonary) and experienced a host of complications including a blood clot in her heart and a blocked pulmonary artery, meaning she spent another four months in hospital.
Sadly, despite finally going home, this was far from our last stay in the hospital. At 15 months old, Evie contracted pneumonia and bronchiolitis and spent a further five and a half months in hospital. Once again, Claire and I were told that she might not survive. We were heartbroken. She’d been through so much, how could this be the end? Amazingly, our brave Evie defied the doctors’ predications yet again and pulled through.
Evie still needed to undergo the third stage of the Norwood procedure, but at three and a half years old her left pulmonary artery collapsed, which meant she couldn’t have the surgery after all. For the third time in only three years, Claire and I prepared ourselves for the possibility that we might lose our daughter. It was so hard. The final stage of the procedure would have given Evie a better chance of life, and it was taken from us in an instant. This time, it really did feel like there was nothing we could do.
That feeling changed again six months later when we were given some hope. It was then that our consultant cardiologist told us specialists at Freeman Hospital had lots of experience with complex cardiology, and that they might be able to help Evie. However, Newcastle was over three hours from our home in Warrington.
We met with a specialist when Evie was four years old, and he said that he thought the final stage of the surgery was viable. We were over the moon. No one was giving up on Evie. However, the surgery was very high risk. The surgeon had over thirty years’ experience, but had never done all the elements of this surgery together before. We needed to be there for Evie but with the hospital so far away, we hadn’t even thought about where we would stay.
It was then that we were told about Scott House, a ‘Home from Home’ run by The Sick Children’s Trust. We didn’t know it at the time, but we would end up staying there for over seven weeks. Having somewhere to stay meant so much to us, especially as Evie has a little brother, Charlie, who was only two and a half years old at the time. To be on the doorstep of the hospital, just minutes from Evie, was incredible. That closeness would have been enough on its own, but for the house to be as nice as it was, and to have the facilities that it did, was fantastic. It was such a comfort to be around other families in similar situations, who really understood what we were going through. Even better for our family was that when Evie was out of intensive care Charlie came and stayed with us, so he was never away from us for too long. We were overwhelmed by the support from the house, especially from the House Manager, Andrew. His team were exceptional in every way.
It was this support that we needed whilst Evie underwent her operation. It was awful waiting to hear how it had gone, but finally the surgery was over – Evie was OK. As far as we or the hospital know, Evie is the first child in her situation to survive this operation. She is a miracle!
Evie is now five and has just started school. Although she may need to go back to hospital, we’re feeling positive and know that The Sick Children’s Trust will be there to support us if we need them again. To go from being told that your little girl has 18 months to live, to seeing her starting reception and making friends, is just incredible and we are so proud of our brave and inspirational daughter.
Dave Turner, Evie’s Dad