Luca was born via caesarean section on 20 June 2023 and spent his first eight days at Chesterfield hospital due to constant sickness. It was clear that something was very wrong. We were transferred to Sheffield Children’s Hospital for further investigation, where a scan identified a possible malrotation of the bowel which meant his bowel wasn’t formed or could rotate correctly, and this required an operation.
Baby Luca. Credit: Rebecca Heath.
However, during the surgery they discovered that rather than being twisted, Luca’s bowel was blocked and close to rupturing. Investigations during his recovery led to his diagnosis of Hirschsprung’s Disease, a rare condition present at birth because of missing nerve cells in the muscles of the colon. It affects only one in 5,000 newborns.
When we arrived at the neonatal unit in Sheffield we hadn’t even considered where we would stay. We clearly needed to remain close, and the hospital was around a 40–60-minute drive from our home in Chesterfield, depending on traffic. I couldn’t drive back and forth anyway as I was still in recovery from my c-section.
Thankfully, a nurse approached me and said there was a room for us at Magnolia House, a ‘Home from Home’ for families with a seriously ill child in hospital run by The Sick Children’s Trust. Jason, my husband, was shown around by a member of their team and came back to the ward so excited by the facilities that were available for us.
It really was such a wonderful place for us, and I honestly don’t know what we would have done without it. The homely room we were given at Magnolia House had three beds, which meant my three-year-old daughter Isabelle could stay and meet her new baby brother. As I hadn’t seen her in over a week, it also gave us some very important family bonding time, and that meant so much to us. The neonatal unit can be an intense, scary environment, with babies covered in wires and hooked up to monitors. We were worried about how Isabelle would react to this. The playroom and toys at Magnolia House helped so much with this, giving Isabelle a bit of normality when she needed a break from the hospital. She loved it in there. Being able to just do normal things like sit down and eat a meal together as a family made such a difference.
Magnolia House gave us a safe private space to have time to process and take in everything that was happening. It helped us stay together as a family, which we needed at this difficult time. Being close to Luca helped us build our bond. Speaking to other families in the house was a great help and the staff there were lovely.
Luca with big sister Isabelle. Credit: Rebecca Heath.
We were only expecting to be in hospital for around seven days following Luca’s surgery, however due to complications and an infection, we ended up staying at Magnolia House for 15 days. The next step was for Luca to start feeding which was a first as he hadn’t even been able to take a bottle, being fed by a line into his stomach. Luca refused all bottles at first, he wouldn’t even put one in his mouth. Although he did take to the bottle quite quickly, it took a week or so for his stomach to get used to the milk, with very gradual increases in the quantities. We also needed to be trained on how to maintain the stoma that Luca had been fitted with, very much becoming medical parents. There was so much to learn, it was a whole new world.
Luca’s journey is still ongoing, he will be having another two operations further down the line. For the time being though, he is being reviewed every two weeks at Sheffield Children’s Hospital and they are so happy with his progress. He’s got a great appetite too – he absolutely loves his milk now!
It’s amazing that a place like Magnolia House exists, you never hear of a charity like this until you really need them. As someone who has been in that situation, it made everything so much easier, and I cannot thank The Sick Children’s Trust and their wonderful staff enough for being there for us.
Bekki Heath, Luca’s mum