Lisa and Steve sadly lost their little boy Tommy last November. Despite facing every parent’s worst nightmare, they have continued Tommy’s legacy by raising money for the place that gave Tommy so much – Bristol Children’s Hospital. We spoke to Lisa about what life was like with Tommy.
“Tommy was a surprise pregnancy – a gift for me and Steve. Everything seemed fine on all the scans – nothing to indicate the issues that were to come. And then my waters broke six weeks early.
I was taken to my local hospital in Bath because despite being early, we all thought Tommy would be okay. He was born early in the morning – and by that evening, our lives had changed forever.
Because he was premature, the nurses tried to put a tube down his throat and feed him. That’s when we found about the first issue – ‘oesophageal atresia’ – a condition that means Tommy’s throat wasn’t connected to his stomach. Straight away, he was transferred to St Michael’s Neonatal Intensive Care Unit (NICU) for specialist treatment. His dad and I went with him and told the NICU nurses we were from Melksham in Wiltshire. How could we go home that evening, knowing our baby was in intensive care?
A nurse arranged for us to stay the night in Cots for Tots House – free accommodation run by the charity that supports the NICU, Cots for Tots. That one night turned into a week, and a week turned into a month… and then a year.
In NICU, they’re so caring and welcoming. You can just see it from the way they want to make sure the babies are happy, and that their beds are tidy and even how they help you fill out your ‘My NICU Diary’ to document your journey – it’s the small things that can often make a big difference. Being there for as long as we were, the faces start to become familiar. You make friends with other parents both on the unit and in the family accommodation and that helps to settle you a lot.
Lisa, Tommy’s mum
The thing is, when you’re told your child needs to go to Bristol for specialist treatment, you don’t think about accommodation, you just think “right, let’s go.” And then I got to NICU, was offered a room and met Anne – who I get on so well with. She always made an effort to make conversation with me and my partner, and it was so nice to have a friendly face there.
After having surgery to correct his throat condition, the team noticed that he also had irregular heart rhythms. It turned out Tommy has Tetralogy of Fallot (TOF) – a combination of four heart defects that change the way blood flows to and from the heart. After two rare diagnoses in a short period of time, the genetics team wanted to look further into Tommy’s health to make sure there was nothing else. We waited for the tests to come back with bated breath. The results came back and told us Tommy has CHARGE syndrome – a very complex illness that affects many parts of the body. To get an idea about how rare this syndrome is: only one in 15,000 children are diagnosed with it.
I was scared to look into CHARGE syndrome – I didn’t want to read about it and wonder about all the ‘what ifs’ of Tommy’s health and future.
After a while, Tommy was transferred from NICU to Bristol Children’s Hospital. He had his heart surgery at exactly six months old – that wasn’t the way we wanted to celebrate this milestone with our baby, but we knew it would make his life better.
Anne noticed we’d moved hospitals very quickly. It’s a bit of a walk up and down St Michael’s Hill several times a day, so she helped us move down to Paul’s House, opposite the children’s hospital. She’s always catered to our needs with a bigger family, and we’re so appreciative.
Tommy has an older half-sister who saw him at his worst and at his best. She visited him a couple of times a week because having a room at Paul’s House meant that she could. It meant a lot to us that Tommy could see his older sister.
Lisa, Tommy’s mum
The staff at Bristol Children’s Hospital – they’re like family to me. You could see how much they cared for Tommy. They’re such good people.
When staff realised Tommy had heart issues, he was put on a ventilator. He also had a trachea ventilator – a tube that goes into your throat to help you breathe, instead of a mask over your face. It means you’ve got more movement, but unfortunately, with it in, Tommy couldn’t talk.
He was on a variety of them over the years – but he’s always been on a ventilator. It’s the norm now – I’ve never known him without one. At the end of the day, he needs it and I know it helps him. It has definitely played a massive part in his life.
Tommy really struggled after his final surgery and ended back on the Paediatric Intensive Care the day before his birthday.
After a very wobbly month, along came October and Tommy was thriving. They did further tests and to our shock they found something new. Tommy was diagnosed with pulmonary vein stenosis – which meant the veins between his heart and lungs were too narrow. Doctors said, ‘no surgery can fix this – his life span is now significantly reduced’.
After lots of dreaded chats with the professionals, we managed to get Tommy back onto the ward, a nice private room for us all to be in. Tommy sadly passed away just seven weeks after his new diagnosis in November.
So many nurses from PICU and Caterpillar Ward came to his funeral. So did his head nurse and his consultant. Other staff from the play team and his music therapist reached out to me. I think that shows just how amazing all the staff are at Bristol Children’s Hospital.”
Since Tommy’s passing, his family have raised over £4,400 for Bristol Children’s Hospital. We want to thank Lisa, Steve and everyone who has donated to Tommy’s Star Tribute Fund – it means we can help more sick children and continue Tommy’s memory.
A Grand Appeal Star Tribute Fund is a special way to remember a child, creating a lasting and rewarding legacy. Just like Tommy’s every fund is unique but will help Bristol Children’s Hospital and St Michael’s Neonatal Intensive Care Unit provide the very best care.