Tommy’s Story

Tommy in hospital

We found out Tommy had a hole in his heart when I was pregnant. When he was born, it was discovered he actually had more than one, as well as a narrow aortic arch, making it difficult for his heart to distribute blood, so he spent the first nine days of his life at the neonatal unit in Cardiff, and we were told he would need surgery. He also had a bleed on the brain before he was born and has cerebral palsy as a result, as well as a condition called hemiplegia, which causes weakness and lack of control on the left side of his body.

When he was eight weeks old, he started having issues feeding and he began losing weight, after which he was readmitted to hospital in Cardiff. Around this time, we were given a date for his surgery, which came around very quickly. I had been dreading it, and when the day came it was worse than I could ever have imagined, although the team at Bristol Children’s Hospital – where he had the surgery – were fantastic.

Unfortunately, the waiting list for on-site accommodation for parents was two pages long because of shortages due to refurbishments, so Tommy’s dad and I had nowhere to stay. Luckily, Evie’s Gift stepped in and paid for hotel accommodation for us. We were so grateful as it was the worst time of our lives and meant we didn’t have that additional stress and worry about where we would sleep. We were able to rest each night and be there first thing in the morning to see our boy.

Tommy had coarctation arch repair surgery and pulmonary artery banding surgery and he’s about nine-weeks post-surgery now. He’s gaining weight and he’s so happy – he’s absolutely gorgeous! He’s also having early intervention physiotherapy for hemiplegia and will need the holes in his heart closing at some point, but the cardiologists are happy with his progress. Honestly, he’s my hero – to go through all that and still smile every day, he just makes my heart hurt.

Louise Lewis (Tommy’s mum)

Tommy recovering at home