Noah was born over 12 weeks early in the Jessop Wing at Royal Hallamshire Hospital (Jessops) weighing just 890 grams. I had been sent there for a second opinion after a scan at my local hospital showed that he was very small and not really moving. Less than four hours after arriving in Sheffield I was being prepared for an emergency caesarean. It was terrifying.
Although he was very small, Noah did really well those first few weeks and it wasn’t long before we were transferred back to Diana, Princess of Wales Hospital in Grimsby. I was excited. It felt like I was a step closer to getting my baby back home. However, within 24 hours Noah had been ventilated and we were being blue-lighted back to Sheffield. Noah had contracted necrotising enterocolitis (NEC), a life-threatening infection where part of the bowel becomes inflamed and begins to die. Time stood still.
Three days later and showing little sign of improvement Noah had his first surgery. He had 15cm of infected bowel removed and was given a stoma, which is an opening on the surface of the abdomen through which he would pass faeces. Noah could no longer be fed milk through his nasogastric (NG) tube and was transferred over onto total parenteral nutrition (TPN), which meant all his nutritional needs were delivered directly into his veins via a Broviac® line, bypassing his digestive system altogether.
Whilst Noah was being cared for in Jessops I stayed at the hospital in one of the rooms they provide for parents, which was adequate and kept me close to my baby boy. It was a pleasant surprise for me, when at almost three months old, Noah was transferred across to Sheffield Children’s Hospital and I was offered free ‘Home from Home’ accommodation at Magnolia House run by The Sick Children’s Trust. It was a totally different experience. The house was amazing with fantastic facilities and I was given a comfortable private room with a direct line straight to the ward where Noah was being treated so if anything changed when I wasn’t with him I would be the first to know. I was so grateful to the charity because Noah was still incredibly poorly and I could never have imagined leaving him each night to make the long drive home. The staff in Magnolia House were an incredible support. They knew exactly what to say and when Noah had a bad day I could rely on them to understand how I was feeling, which helped me to feel less lonely.
Being close to Noah at all times meant I was able to play a really active role in his treatment. I was there for the daily ward rounds, which tended to be early around 8am, and keep up to speed with his surgeon. I quickly learnt how to administer his stoma care. Later, when he grew stronger, I also learnt how to manage his NG feeds. By learning how to care for Noah myself being so close to him at all times meant we were able to leave hospital sooner than expected. Staying at Magnolia House gave me the all-important time to bond with my baby, which I know in turn helped him grow stronger.
In October, when Noah was over seven months old, although the surgeon hadn’t successfully managed to reverse Noah’s stoma, he was discharged and I took him home for the very first time. I knew we would have to go back to Sheffield for further surgery in time, but I didn’t expect it to be so soon. It really felt like we were taking one step forward and two steps back when, just five weeks after getting home, Noah became seriously ill once again and was readmitted. He was vomiting all his feeds, had become severely dehydrated and, even worse, his Broviac® line had become infected.
Over the next few months we lurched from one emergency to another, with things reaching crisis point just after Christmas. At the time I was staying in The Sick Children’s Trust’s other ‘Home from Home’ at Sheffield Children’s Hospital, Treetop House. The hospital team called me directly on the line in my room to say Noah was in a critical condition and had been transferred to the intensive care unit. Not only did Noah have flu, he had also contracted sepsis. Once again time froze as my precious baby was intubated and specialists fought to save his life, whilst the world around us celebrated the New Year.
It was up and down at the beginning of the year and the hardest time of my life. Fortunately, once again, I was right there by Noah’s side. Having a seriously ill baby in a hospital far from home is very lonely so, again, it was a real comfort to have a ‘Home from Home’ and the emotional support of the house staff. I also met lots of other families with sick children in the hospital and we became really close, bonding over our shared experiences and ongoing traumas. When Noah had stabilised, and I felt confident to leave him for a few hours, I would go shopping, for a meal, or to the cinema with other mums staying at Treetop House, which really improved my state of mind and in turn helped me be there for my baby.
Noah successfully underwent stoma reversal surgery at 14 months old and was discharged just over four weeks later. It was an incredible, yet daunting feeling, to say goodbye to my Treetop House family and leave the hospital after so many months. However, since getting home to my friends and family Noah has gone from strength to strength. I recently had him christened, which was a very emotional day. On more than one occasion, when nobody thought he was going to make it, I had almost had him christened in Sheffield – so this was an amazing milestone that we didn’t have to celebrate in hospital!
Although he still has many appointments with different specialists and there is a way to go, I am optimistic that this Christmas will not be spent in Sheffield Children’s Hospital, but at home. However, I will be thinking of the families who are not so lucky, and hope that they have somewhere like Magnolia or Treetop Houses to stay, close to their poorly child.
Tina Prestwood, Noah’s Mum.