When I found out I was pregnant, I was absolutely overjoyed and incredibly excited to have my first baby. I contracted cholestatis at 21 weeks which caused some issues and Doctors thought my baby may be premature, but there were no real signs Chace was going to be born when he was. Chace was born at 31 weeks and three days, weighing 3lbs 13oz. Although he weighed below average for a new born, he was a healthy weight for a premature baby and at first he didn’t seem to have any complications.
Chace remained a healthy baby for almost a week. We were required to stay in hospital so he could be monitored due to his prematurity, but he seemed to be doing so well. Unlike most premature babies, he didn’t even require breathing support – I felt so proud of my boy and was beginning to look forward to taking him home.
But on day six, Chace suddenly went pale and became completely lifeless. It seemed so odd – one minute he was fine and the next it was as if he was a different baby altogether. I felt confused and overwhelmed. I didn’t understand how things could change so quickly. I was absolutely terrified.
He was put on a ventilator and we were told we were going to be transferred to Jessops Hospital in Sheffield as our local hospital couldn’t support Chace’s needs. That journey is still very much a blur. I can remember just starring at Chace and desperately hoping he would be ok while the medical team tried to keep him alive. I couldn’t speak, I felt so sick with worry and desperation – I’ve never been so scared in my entire life.
When we arrived at Jessops an X-ray revealed that Chace had necrotising enterocolitis, meaning the tissues in his bowel were inflamed and were starting to die. At first it appeared he was responding well to the medication, but on the fifth day an X-ray showed that the inflammation had begun to move up into his liver as it had developed incredibly quickly.
Once again, I was feared for my baby’s life. I was told Chace would need immediate surgery at Sheffield Children’s Hospital so they could fit a stoma. I didn’t know what to think. As soon as I thought Chace was getting better, we were being taken to another hospital for him to have lifesaving surgery.
The surgery involved fitting a stoma and cutting away 40cm of Chace’s small intestine as it had already died. All I could do was wait. I knew that I needed to be near my baby, but I had no idea how I was going to do that, living over 40 minutes away from the hospital. But then the hospital team told me I had a room at a place called Magnolia House, which was run by charity called The Sick Children’s Trust. I was told I could stay there for free for as long as it took Chace to recover and I would be staying just minutes from his bedside.
When I walked into Magnolia House I was amazed. It was modern, calm and had absolutely everything I needed – it was like being at home. And the best bit was it meant I could stay close to Chace; I could focus on looking after him as I had somewhere safe, secure and comfortable to look after myself. I could stay strong for my baby and be there for him when he needed me the most.
Chace’s surgery went well and he began to make a recovery. I can’t describe the relief I felt. I knew he would be staying in hospital for a while – he had to be a safe weight and tolerate certain feeds before he could go home. But with the support of Magnolia House I felt I could cope.
He then required a stoma reversal and this was also a success. We stayed for six weeks until Chace was strong enough to go home. I couldn’t wait. Magnolia House made me realise just how lucky I was to be taking Chace home, because although he still had a long way to go, I knew some families would be leaving Magnolia House without their children.
At first, being at home with Chace was wonderful. I was surprised how quickly we were able to adapt to our new son living with us. But as the days turned into weeks, I started to become concerned. He kept being sick, wasn’t passing stools well, and was grumpy and fidgety all the time, and he wasn’t growing. I felt something was wrong so we went back to the doctors who referred us to the hospital for tests. An X-ray revealed news that we didn’t want to hear; there was a blockage in Chace’s bowels which had narrowed due to the stoma reversal and he would require yet more surgery to clear it.
I felt like we were back to square one. I felt worried, anxious and incredibly concerned. My baby had already undergone surgery, would he be able to tolerate more?
Once again, The Sick Children’s Trust supported us. We were able to stay at Magnolia House while Chace underwent the third major surgery to save his life. Knowing I could stay at Magnolia House again was such a massive relief; I had somewhere I could look after myself, so I was able to support my baby.
Thankfully, Chace’s third surgery was a success and after two weeks I was allowed to take him home. Now we’re here, Chace has continued to thrive, he’s such a happy baby who is always smiling and laughing. When I think about how much Chace has been through in such a short amount of time, it amazes me. Thanks to The Sick Children’s Trust’s Magnolia House, I was able to be there for him throughout it all and that’s a truly wonderful feeling – he never had to be alone.
Natasha Thorpe, Chace’s Mum