Having Stevenson House meant we could walk through this nightmare together

We had no idea that Kiara would be born early, but we think that she did because she knew how poorly she was and this was her way of telling us.

Maybe it was mother’s intuition, but I knew Kiara wasn’t well from the moment she came into our lives. Yes, she was three weeks early so it was expected she would have some issues. But for the first two days, Kiara wasn’t feeding and she wasn't showing any signs of bowel movement. Then, very early one morning - before she had even turned 36 hours old – she was being sick, but it was a green sick. As first time parents, you can imagine how shocking this was, and the instant thud in your chest. Panic, fear and worry hit us all at once. Within minutes, our baby was rushed off to the Special Care Baby Unit (SCBU) and we felt stranded. We’d been so excited to see Kiara, waiting for her to complete our family, but it felt as if that idea was slipping through our fingers. When we got to see her, it hurt so much. It hurt to see how poorly she was – we watched her through the incubator, she was all wired up and I knew she was in pain. We were told Kiara had a swollen tummy and possible bowel infection. All I wanted to do was reach out and give her a cuddle, but before I could we were told that she needed to be taken to The Royal London Hospital, where they had a specialist who could look after her needs.

And The Royal London did look after her needs. Specialists there did a biopsy where it was discovered that Kiara had Hirschsprung’s disease - a condition where nerves which control the muscles in the bowel are missing. The first five days she was there was such a strain as we had to travel to the hospital from Rochford every day to be with our baby. Being separated from Kiara was the worst thing in the world, it was so upsetting to give her a kiss on the cheek every night and leave her there, fighting alone. We were worried in case anything happened during the night and we wouldn’t be able to get there quickly. Those days were especially emotionally and physically draining.

However, we were lucky that we didn’t have to travel there and back every single day for the following two weeks. Fortunately, a room became available at a place called Stevenson House, run by The Sick Children’s Trust. Stevenson House became our ‘Home from Home’ and we were given our own room where we could rest and be just a few minutes away from Kiara, all for free. This really helped with the worries we’d been having while travelling home every day.

We had so much support at Stevenson House and it wasn’t just a house to us. Not only were we just minutes from her side, but we could call the ward at any time using the direct telephone line in our room which was more than we could’ve wished for. The Sick Children’s Trust supported us emotionally too. Having a room in Stevenson House for George and me meant we could walk through this nightmare together and be there for each other. We were both going through the same emotional turmoil and could support each other in taking the next step. Not only that, but the Stevenson House team were great. They were there for us to talk to and share our load, something which didn’t go unappreciated.

For three weeks we waited for Kiara to become stronger until we were finally told we could take our baby home. We couldn’t have been happier.

Since coming home, Kiara has had an operation to fit a stoma which we are hoping will be reversed in the next couple of months.

Kiara never stops smiling, even though she still has a couple of things to overcome. It could have all been different and we are so grateful for how much progress she is making. All we can do is look forward to the future, celebrating her first Christmas at home, then her first birthday and many more happy occasions to come.

Stephanie Thorn, Kiara’s Mum