My partner Paul and I were supported by The Sick Children’s Trust when our four year old son underwent open heart surgery in Leeds Children’s Hospital earlier this year. We were given a room in Eckersley House, free ‘Home from Home’ accommodation, run by the charity that meant we were never more than a few moments from his hospital bedside. This was important for us, but more so for Rupert, who needed both his Mum and Dad by his side.
Fortunately our stay was only a short one and Rupert was discharged home within a week, but we met families in Eckersley House with children much sicker than Rupert and saw first-hand the impact The Sick Children’s Trust was having on them during very traumatic times.
Rupert’s surgery didn’t come as a shock to Paul and me. The sonographer had first detected a vertebral anomaly on his spine at my 20 week scan, known as a hemivertebrae, and two of his vertebrae were fused together. This alone wasn’t serious, but we were very worried when the specialist warned us the condition could be linked to more serious defects, often concerning a baby’s heart and digestive system.
My pregnancy continued to run smoothly for the next three months. However, a few days before my birthday I began to feel unwell. Paul was away and about to travel to South Africa with work so I took myself to our local GP in Sheffield, who told me to go straight to the Jessop Wing at Sheffield Royal Hallamshire Hospital. It turned out I was suffering with severe pre-eclampsia and needed to be admitted. I had incredibly high blood pressure and far too much protein in my urine. Paul raced straight back to be with me, which was lucky because my condition worsened to HELLP syndrome, a life-threatening pregnancy complication, and my liver began to fail. If they were to save both our lives, the doctors had to deliver Rupert immediately.
Rupert was delivered by emergency caesarean at 00:20 on my birthday, weighing just 3lb 10oz, but thankfully he seemed alright. He was taken straight to the neonatal intensive care unit and put on oxygen in an incubator. All his baby checks came back clear and he was moving well so the doctors weren’t worried about his spine. For the next four weeks Rupert grew bigger and stronger on the special care baby unit. Because of his prematurity he struggled to maintain his temperature and needed to be in a heated cot, but other than that he was healthy and it wasn’t long before we took him home.
Several months later, and under the care of the Jessops neonatal team, Rupert’s doctor detected a heart murmur. Further tests revealed an atrial septal defect (ASD) and pulmonary stenosis. ASD meant that there was a hole in the wall separating the top two chambers of Rupert’s heart and that oxygen-poor blood was leaking into the oxygen-rich blood that was being pumped around his body. In addition to this, the pulmonary stenosis meant that his pulmonary valve was too narrow. We were incredibly worried, but reassured by the specialist who told us the condition was manageable, but that our son would need open heart surgery at a later date and until then his condition would be monitored by a specialist team based at Leeds Children’s Hospital.
Over the next few years Rupert’s condition remained relatively stable, but he did experience many respiratory issues, such as pneumonia and various chest infections, which resulted in a collapsed lung at one point. This has meant many stays in Sheffield Children’s Hospital, often for weeks at a time. There always seemed to be something wrong and the doctors kept him on a course of long term antibiotics with the specialist team from Leeds carrying out regular check-ups. The hope was that correcting the issues with Rupert’s heart would help with the respiratory problems.
And so earlier this year we found ourselves on the intensive care unit at Leeds Children’s Hospital with Rupert undergoing his pre-operation checks. Thankfully the operation that followed was a success and for two days we were allowed to stay in a small family room off the ward before The Sick Children’s Trust offered us a place to stay in Eckersley House. We were exhausted so it was such a relief to move into the ‘Home from Home’, where we had a comfortable room and access to a spacious bathroom and fully-stocked kitchen with our own spaces in the fridges and cupboards.
Even though I knew Rupert was getting better I couldn’t physically have gone any further away from him than Eckersley House. I could see the hospital from our room and phone the ward if I was worried and I knew that if anything changed Paul and I would be by his side in two minutes. Plus the staff in Eckersley House were so supportive and it felt like they really cared about how Rupert was doing and how we were coping for the duration of our stay. We weren’t just supported practically by The Sick Children’s Trust, the staff propped us up emotionally too.
Five days after the operation Rupert was discharged and has thrived ever since. We had never thought he presented with symptoms of his heart condition before the operation, but clearly he did as we can really tell the difference in him now. He is super energetic and full of the joys of Spring! He used to go to a nature nursery close to home and the children walked through the woods every day, but he has just started at our local village school. We do still take Rupert back to Leeds for check-ups and his spinal condition is monitored yearly, but for now Paul and I are pleased to say that Rupert is one very happy little boy!
Josie Walker, Rupert Howard’s Mum.