In November 2023, Lisa and Steve faced every parent’s worst nightmare when they lost their beloved son, Tommy. Born prematurely and diagnosed with multiple life-threatening conditions, Tommy’s journey was fraught with uncertainty and heartbreak. But through it all, the dedicated staff at St Michael’s Neonatal Intensive Care Unit (NICU) and Bristol Children’s Hospital provided the care and support that gave Tommy the chance to fight and live. Now, in Tommy’s memory, Lisa and Steve are raising funds for the very hospital that gave their son a chance at life.
A Difficult Start to Life
Tommy’s birth was nothing short of a miracle. “We didn’t expect anything like this,” Lisa says. “I had a normal pregnancy up until the 23rd week, when my blood pressure skyrocketed, and I began swelling. The doctors diagnosed me with pre-eclampsia, a serious condition, and we were told Tommy would need to be delivered immediately.”
Tommy was born early at just 25 weeks, weighing only 419 grams—about the size of a tin of tomatoes. “When he was born, we asked, ‘Is he alive?’” Lisa remembers. “And to our amazement, he was, and he was kicking away.”
But their relief was short-lived. Tommy was diagnosed with oesophageal atresia, a condition where his throat wasn’t connected to his stomach. This required immediate treatment, and Tommy was transferred to St Michael’s NICU for specialized care.
The Long Road Ahead
The first few weeks in the NICU were a blur of tests, treatments, and surgeries. “I didn’t know how we’d get through it,” Lisa recalls. “Tommy was so small and fragile. But the doctors and nurses at NICU became like family to us. They supported us through every challenge, and we knew Tommy was in the best possible hands.”
In addition to his throat condition, Tommy was soon diagnosed with Tetralogy of Fallot, a heart defect. Further tests revealed that Tommy had CHARGE syndrome, a rare and complex condition that affects multiple organs. “I didn’t want to look into CHARGE syndrome. I was too scared to know what it meant for his future,” Lisa says, choking up. “But even with all the hurdles, Tommy kept fighting.”
At just six months old, Tommy underwent heart surgery. The surgery was difficult and terrifying, but the staff at the hospital gave Tommy a fighting chance. Unfortunately, complications arose, and Tommy had to be put on a ventilator. “He’s been on a ventilator for most of his life, and at times, it felt like that was our new normal,” Lisa says.
The Impact of Cots for Tots and the NICU Team
Throughout Tommy’s time in hospital, the family was supported not just by medical professionals, but also by Cots for Tots, a charity that provides free accommodation for families with children in NICU. “Cots for Tots gave us a place to stay just minutes away from Tommy’s bedside. It was the only way we could be close to him and still take care of ourselves,” Lisa explains. “Anne, the manager at Cots for Tots House, was a huge comfort. She became a familiar face, and having someone to talk to helped more than I can describe.”
Lisa also appreciates the small, but significant, gestures of care, like the ‘Your NICU Story’ diary, which allowed her to document every milestone and emotion. “I filled out the diary every day. I want Tommy to read it one day and see what a warrior he was,” Lisa says. “The little things like the Miniboos and music therapy made such a difference. It gave us comfort knowing Tommy was being soothed by music and that he had a comforter with my scent on it.”
A Heartbreaking Farewell
Despite all the medical efforts, Tommy’s health continued to decline. At seven weeks old, he was diagnosed with pulmonary vein stenosis, a condition that caused narrowing of the veins between his heart and lungs. “The doctors told us that surgery wouldn’t help and that Tommy’s life expectancy was now significantly reduced,” Lisa remembers. “We knew we had to make the most of the time we had left with him.”
Tragically, Tommy passed away just seven weeks after his diagnosis, but the love and care from the staff at Bristol Children’s Hospital remained with Lisa and Steve. “We’ll never forget the staff who went above and beyond for Tommy. They were there for us every step of the way,” Lisa says.
The family’s grief was made even more bearable by the outpouring of support from the hospital staff, who attended Tommy’s funeral. “It meant so much to us that so many of the nurses and doctors came to say goodbye,” Lisa says. “They truly cared for him as if he were their own.”
Tommy’s Legacy: Raising Funds for Future Generations
In Tommy’s memory, Lisa and Steve have set up a fundraising campaign to support Bristol Children’s Hospital and Cots for Tots. “Tommy’s legacy lives on through our fundraising efforts,” Lisa says. “We’re raising money to help other families who are going through what we did. The hospital gave Tommy a chance, and we want to give back to the place that gave us hope.”
With the help of their friends, family, and even strangers who have supported them, Lisa and Steve have raised over £4,400 for Tommy’s Star Tribute Fund. The money will go towards supporting the care of other sick children and families who need a place to stay close to their loved ones during difficult times.
“We want Tommy’s story to help others,” Lisa says, wiping away a tear. “He fought so hard, and we’re proud of him. We hope that by sharing his story, we can make a difference in the lives of other families who are facing similar challenges.”
A Lasting Impact
Tommy’s journey was heartbreaking, but his legacy lives on through the funds raised for Bristol Children’s Hospital. Lisa and Steve’s courage, despite their loss, continues to inspire others, showing that even in the darkest moments, there is hope, love, and the strength to make a difference.
Your donation to Tommy’s Star Tribute Fund can help ensure that children like Tommy receive the care and support they need. Every contribution will make a lasting impact on the lives of families who need it most.
