When I was 20 weeks pregnant we found out that our son, Louie, had a heart condition and it was very likely that he would need surgery shortly after he was born. It felt like my whole world came crashing down at the news and it weighed heavily on my mental health throughout the rest of my pregnancy. My partner Lewis and I were full of worry, we didn’t even want to buy Louie any baby clothes in case we lost him.
I was also extremely poorly throughout my pregnancy and at 26 weeks I suffered preterm premature rupture of the membranes (PPROM). That resulted in Louie being born six weeks premature in November 2021 at Leeds Children’s Hospital. Louie was a small 3lbs 5oz and he needed extra calories in his milk as well as iron medication and antibiotics.
Being monitored on the Neonatal Intensive Care Unit (NICU), his heart condition was diagnosed as coarctation of the aorta. This is a birth defect which causes the aorta to be too narrow and restricts blood flow to the rest of the body. The doctors told us that Louie would need surgery to widen the aorta as he wouldn’t survive with the condition. However, with Louie being so small we would need to wait until he got bigger before he could undergo the procedure. Our time in Leeds was going to be extended but we had no idea how long for.
This was the worst time of our lives. We have two other children, Hollie and Reggie, who were waiting to see their little brother back at our home in Doncaster and they couldn’t come and see us at the hospital either because of covid restrictions. Also, with parents unable to stay on the NICU, we were worrying about how we could stay close to Louie. It was at this point we were told we had a place to stay with The Sick Children’s Trust at Eckersley House. The ‘Home from Home’ is located just minutes from the children’s ward and meant we could always be near to Louie. It also allowed us to travel back to Doncaster and see Hollie and Reggie before returning to the hospital, knowing we had somewhere to stay. It took away all the extra stresses about where we would sleep each night.
It wasn’t until Louie was ten weeks old that he was able to undergo his surgery. This sadly meant that we spent his first Christmas in hospital while we waited for him to get big enough for the procedure. To make matters worse, I was also admitted to hospital at St James on the 23 December for a reoccurring condition, splitting our family of five into four different places just days before Christmas. Louie and I were in separate hospitals, Lewis was at Eckersley House and Reggie and Hollie were at home. What should have been such a happy time was full of worry and dread. Thankfully I was able to go over to Leeds Children’s Hospital and be with Louie and Lewis on Christmas day. While far from how we thought we’d be spending Christmas, it was still lovely. There was a Santa at the hospital who came and delivered presents to all the babies, with cards and baubles for us parents.
The staff at Eckersley House also made it a special occasion and gave us presents for Hollie and Reggie. We were given a hamper to make us feel a little more festive as well. The staff were all so lovely, thoughtful, and welcoming. They would talk to us whenever they saw us, which helped immensely when either of us were having a bad day or when we were alone. Without Eckersley House Lewis would not have been able to be around when we needed him, and we certainly wouldn’t have had Christmas together like we did. We had a place to have Christmas dinner, watch a Christmas film and we spent the entire day with Louie. It made Christmas a little more bearable.
Even though we’d had time to prepare, when the day of Louie’s operation arrived we still weren’t emotionally ready for him to undergo major surgery at such a young age. I remember carrying him to theatre in my arms, cuddling and comforting him as they put him to sleep before laying him down on the operating bed. I felt like I couldn’t move from that spot after they took him in. The surgery itself felt like it took forever, it was the worst few hours of our lives.
When we received the phone call to say he was awake, and the procedure had been successful, the relief was overwhelming. The surgeon told us after the surgery that the only way Louie had been getting any blood flow to his lower body was by a tiny piece of fibre. We were extremely lucky that he was still alive.
We remained at Eckersley House throughout Louie’s recovery and it provided us with everything we needed. At the ‘Home from Home’ we had food when we needed it, somewhere to wash and dry our clothes, a comfortable room and the stability of being by our son’s bedside day and night. It was our ‘Home from Home’ and made all the difference to us. While the surgery was successful, there is no guarantee that Louie will not need further treatment. However, we live for today and, right now, he’s doing brilliantly. He does have regular check-ups, and until recently he was having support from a dietician because he is a little dainty, but generally he’s doing well. This year we are looking forward to spending Christmas all together. We’ll be putting our decorations up early in November and celebrating as much as we can. Louie is almost walking now and is a mischievous monkey, so I can see the Christmas tree baubles being rearranged a few times!
The staff at Eckersley House made a worrying, heart-breaking time that little bit easier. For that I will always be grateful. We owe The Sick Children’s Trust so much and we’re encouraging everyone to support their Together at Christmas appeal to give another family, like mine, the gift of being together this Christmas.
Rebekkah Evans, Louie’s mum.