When our twin boys came into this world, we knew things wouldn’t be off to an easy start. This wasn’t just because we are both first parents or we had two babies to handle, we knew things would be tougher because at our 20 week scan we were told something wasn’t right.
At this stage into my first pregnancy, you can imagine how worried we were. I thought that everything would be fine and go to plan as expected, but this completely took us down a different path. We were told that one of the twins was seriously ill: the scan had shown there was something wrong with his heart. This twin would be named Roman and we would later find out that the problem was a blockage in the flow of blood from his heart to his lungs called pulmonary atresia – something very rare.
As the weeks went by, we went for regular scans so doctors could keep monitoring the twins and when the moment came for our little boys to enter the world, it all went relatively smoothly. Roman and his brother, Hunter, were delivered by planned caesarean at Newcastle’s Royal Victoria Infirmary.
At just one-week-old, Roman needed an operation. This would be the first of many. For a moment, however brief it may have been, things were looking up. Both boys were doing well and we were transferred to a hospital nearer home in Fishburn, but things soon changed. Roman’s condition deteriorated and we were rushed back to Freeman Hospital where he had to undergo an operation to have a shunt fitted in his artery.
This was back in January and Roman has been in hospital ever since, all in all undergoing 15 operations. The condition he has is very complicated which makes treating it even more so, but despite all his surgeries, he is fighting on and making us proud.
We are currently waiting for a little heart and are not sure how long the wait may be – it could be months. Hospital life is very stressful, not knowing what the day has in store, the noise, the atmosphere and also striking a balance with our emotions. Having a baby that is seriously ill and another who is healthy and happy is not easy – one minute you’re laughing with joy, the next minute you’re crying rivers. Having said all this, we are not going through it alone, there’s a place on the hospital grounds called Scott House, where we can rely on for a bit of normality.
For the last nine months we have made a life for ourselves in Newcastle. We have a ‘Home from Home’ which is provided by The Sick Children’s Trust. This charity is incredible. It is just what our family needed. Craig and I live in Fishburn, around an hour away from Newcastle, and we had no idea what was going to happen when the boys were born – this house was our saving grace.
Scott House has significantly helped us emotionally in dealing with what we are going through and it helps us practically - not once has our family been separated. Hunter has been able to be with us and his brother throughout it all, as the house is literally a couple of minutes’ walk from the ward.
We do try and pop back home on the weekends every now and then for Hunter’s sake so he can see his grandparents and the rest of the family, but actually nothing makes the boys smile more than when they are with each other. That wouldn’t be possible without Scott House.
We’re not sure how long we’re going to be with The Sick Children’s Trust, but worrying about where we will be sleeping or eating doesn’t ever come into it as the charity is there for us, so we can be there for our son - as a family.
Zoe Pickering, Mam to Roman and Hunter