Before our daughter Olivia was even born, we knew that she would need some looking after at specialist hospitals across the North East.
We arrived at our local hospital, the Cumberland Infirmary in Carlisle, for our 20 week scan which is where we found out that Olivia had a problem with her heart. We were referred to the Royal Victoria Infirmary (RVI) in Newcastle upon Tyne for another scan the following day. And although we were told not to worry, we did.
It was revealed that Olivia had just a 50% chance of survival. She had Ebstein's anomaly, a rare heart condition which accounts for just 1% of congenital heart defects, but has a significant impact on those with the condition. This effected the valve in the right ventricle of Olivia’s heart which meant that it was working less efficiently.
Despite what we were told, we never stopped believing in Olivia and never thought that there would be a chance that she wouldn’t survive. There was a great team of doctors who assured us that if Olivia made it through the pregnancy, there was so much they could do to help make her better.
Olivia was born on the 27 March 2015 at the RVI and she did so much better than the team expected, only needing oxygen at birth. She was transferred immediately to Freeman Hospital – also in Newcastle – where there was a team who would be able to look after her and her heart condition. It was very late in the evening when Carrie gave birth to Olivia, so we made the decision that I would stay with Carrie at the RVI while she recovered. We knew our daughter was in safe hands.
We went to Freeman Hospital as soon as we could. On arrival we were told that there was a room ready and waiting for us at a place called Scott House. We found out that Scott House was free ‘Home from Home’ accommodation run by a charity called The Sick Children’s Trust and we were amazed. We had been told about Scott House at our antenatal appointments but had not been expecting the level of comfort, not to mention how close it was to the hospital. Living so far away, it was a major weight lifted off our minds.
Scott House felt like a real home. Everything we could’ve possible needed throughout our stay was there. A clean and tidy kitchen to prepare meals, a table to eat at, somewhere to do our laundry and a place to rest our heads at night. And there was a team of people to chat to, ask for help and who were on hand and ready to listen.
Olivia really impressed everybody with how well she was doing and after two weeks at Freeman Hospital we were discharged, but knew that at some point she would need surgery. It would be delayed as much as possible to let her grow bigger and stronger.
Over the next two years we travelled back and forth to Newcastle mainly for clinic appointments and various tests and procedures, some of which meant an overnight stay at Scott House. But at one point, we also came to know that the charity ran another ‘Home from Home’ called Crawford House. Olivia had been suffering from arrhythmia and was rushed to the RVI where she was admitted to the paediatric intensive care unit. The Sick Children’s Trust helped us again. For a week we didn’t have to worry about being by our daughter’s bedside as we had a place to call home.
Just before Olivia turned two years old, we were given the news that this was the year. The year she would have surgery to repair her leaky valve.
We were immediately terrified. Although we always knew the surgery would happen at some point, it was still a shock. We had to wait seven months before the hospital called us in and it was like a cloud hanging over us, every day we wondered if that would be the day we got the call.
It was in late August that the call finally came, telling us to go to Freeman Hospital. We were told to pack a bag and make our way to the hospital that afternoon as there was a space for Olivia’s surgery the following day.
After we kissed Olivia goodbye we walked around the hospital in a daze, trying to stay positive.
Initially, the operation looked like it had gone to plan. But in recovery Olivia became seriously unwell and she struggled. She was urgently put on an artificial heart machine called ECMO which took over the job of her heart while hers rested, recovered and got stronger.
Time was of the essence at this point as there is only so long a person can be on ECMO. Olivia ended up having to go to theatre twice more to have an artificial valve fitted and to have a hole put between the chambers of her heart to help the pressures but the function of the right side of her heart still wasn't strong enough to come off ECMO. For her final and most crucial operation, the surgeons decided to do a type of bypass known as the Glenn shunt which would ease the workload of the right side of her heart. But we were warned that it would only be possible if the pressure in her heart was low enough, if not Olivia would have to have a more permanent artificial heart fitted while she waited for a transplant. And during the procedure, the decision was made for a pacemaker to be fitted.
Being at Scott House during this time when Olivia was at her worse was such a huge help. We were just so close by and it meant we could be there throughout all the decision making, be involved in all the conversations about next steps and most importantly we could be there for Olivia. Olivia’s brother, Finley, missed us so much while she was in hospital and Scott House kindly set up a camp bed in our room so he could come and stay. He’d stay for half the week at home and half with us, travelling back and forth with family when they came to visit. Being able to have him there was a great comfort and distraction.
And unlike the previous times when Olivia had gone to theatre when we walked around the hospital in a daze, family came to visit. We took them to Scott House and tried to pass the time as best we could. It was nice to be able to wait there as it was calm and quiet, away from the bustle of the hospital.
Thankfully, all went well with the final procedure and she was able to come off ECMO, spending a further four weeks on ward 23 recovering. In total we spent six weeks in hospital and we are indebted to Scott House and all the staff for making our stay easier.
Nearly four months on, Olivia is a lot better. She is more confident and has a bigger appetite. She is a real girly girl, loves everything pink and playing with her dolls. We’re hoping that a heart transplant won’t be needed in the future. Although she will, at the very least, need a larger artificial valve as her heart grows.
We go back to Freeman Hospital for checks every three months and they think she may need more procedures in the future but, for now, she is doing great.
Mike Harrison, Olivia’s dad