My little boy isn’t even a year old and he has already been through so much. If it wasn’t for The Sick Children’s Trust, who have supported me for over three months, I don’t know how I could have coped. I have had to watch my baby being intubated, sedated and wired up to life support. Here is my story.
All the scans during my pregnancy were completely normal and Finn seemed to be developing well – in fact, because I am a diabetic, the consultant said he was a very big baby. I also suffer from a condition called hepatocellular adenoma, which means there is a rare, benign tumour growing on my liver. As a result, it was decided that when I did give birth it would be at specialist Jessops Hospital in Sheffield, in case we suffered from any complications.
When I went into labour at just 32 weeks and two days, my partner, Ben Taylor, and I were shocked and scared, but managed to get to Jessops just in time. Finn arrived naturally on 23 August 2017 and, as a result of the diabetes, already weighed 5lb 10oz, which was a surprise yet very reassuring.
For two weeks, both Finn and I were monitored closely at Jessops with Finn being looked after on the neonatal intensive care unit (NICU). He was having problems with his breathing, but was transferred back home to Chesterfield Royal Hospital, just a few minutes from where we live. We hoped it wouldn’t be long before we could bring him home and introduce him to our friends and family.
Finn came home for the first time when he was seven weeks old. It was a momentous day for all of us, but pretty soon the excitement settled and we relaxed into life as a family of three – well as much as anyone can relax with a new baby that demands constant attention!
Things began to go wrong for us in December. Finn caught a terrible cold from Ben and it just would not shift. He was having a lot of trouble with his breathing and his lungs, as well as losing interest in feeding. We struggled on with the advice of the local GP until Finn’s six month review at Chesterfield Royal Hospital when the consultant confirmed our fears that our baby had lost a lot of weight. In a very short period of time he had gone from measuring at the 75th weight percentile for a baby of his age to just the 2nd weight percentile. It was devastating news, but the consultant recommended high calorie milk and sent us home.
We struggled on for a few days, but before long we were back in hospital. Finn’s breathing had deteriorated further, but now he was also burning up with a temperature. He was admitted to the paediatric intensive care unit (PICU) and put on high flow oxygen to calm his respiratory distress, which seemed to work. Then, two days later, Finn crashed. Suddenly, without warning, my baby was being intubated and ventilated. It was terrifying. I thought he was going to die and I couldn’t help him. I felt useless as the doctors swarmed around his cot, but there was nothing more they could do. Finn needed treatment in a specialist paediatric hospital if he was to survive.
And so we were transferred by ambulance to Sheffield Children’s Hospital in the middle of the night. We arrived there at 2am on 27 February and Finn was immediately rushed into PICU. The specialists kept him sedated as they battled to save his life, and for two days I watched on, helpless, catching a few hours of sleep each evening on a pull-out sofa in the parents' room next to the ward. That is when I heard about The Sick Children’s Trust. A nurse came into the room and asked me why I was sleeping there – I told her my baby was seriously ill and I couldn’t contemplate leaving him nor could I afford a hotel or room in a nearby B&B.
So that was that. In my hour of need it was The Sick Children’s Trust who came to my rescue and offered me free accommodation in Magnolia House, one of two ‘Homes from Home’ at Sheffield Children’s Hospital, just a few minutes from Finn’s hospital bedside. It wasn’t just the practical support they provided, it was the emotional comfort from the house staff that made all the difference. Ben was back home in Chesterfield, working hard to support us and I was alone, miles from home, with a seriously ill baby. Having the staff there to offer words of comfort or make me a cup of tea really lifted my spirits. I had a lovely room too, which was private and had a direct phone line to the ward where Finn was being treated. The nurses reassured me that if anything changed, day or night, they would call me immediately.
After five days the doctors woke Finn up. By this point he had been diagnosed with influenza B and bronchiolitis. Although still hooked up to machines that were helping him to breathe, he was moved from PICU onto the high dependency unit (HDU). I moved into Treetop House at this point, the second ‘Home from Home’ at Sheffield Children’s Hospital because it meant I would be closer to Finn on HDU. Treetop House, like Magnolia House, was amazing, with a fully-stocked kitchen, private bedrooms, sitting rooms and, most importantly, the same wonderful house staff. Finn’s condition continued to improve every day and it wasn’t long before we were on a general ward preparing for a transfer back to Chesterfield Royal Hospital. It seemed like he was through the worst of it as I packed up my room at Treetop House and said goodbye to the staff.
However, we hit another wall when Chesterfield said they didn’t have space for Finn. I had already given up my room at Treetop House, which is always in very high demand and, because Finn was now on a general ward, I was able to stay next to his bed. It was uncomfortable though and I slept badly, so you can imagine my relief when Ann offered me a single room back in Magnolia House. I jumped at the chance because Finn had faltered in his recovery and the doctors were no longer sure he was ready to be transferred.
Having been stuck on the ward for three days it was a godsend to move back into Magnolia House. I relished being able to tumble into a comfortable bed that evening in private. Over the days and weeks that have followed, Finn has caught influenza A, suffered from a collapsed right lung, caught multiple chest infections and been very poorly. We were on the brink of being transferred home so I am very relieved we have been at Sheffield Children’s Hospital throughout his relapses because Finn has been able to receive the specialist care he has desperately needed.
Ben visits us regularly in Sheffield, but he needs to work and keep everything at home ticking over. However, rather than feeling lonely when he leaves, I talk to other families staying in Magnolia House and listen to what they are going through and how much of a difference The Sick Children’s Trust has made to their lives. Sometimes it is reassuring to speak to parents whose children are a little further along in their recovery as it encourages me to stay positive and know things will get better. I don’t know how I could have coped without The Sick Children’s Trust and the sense of safety and security it has given me.
Shannon Brown, Finn Taylor’s mum.