“When Tom was 16-months-old he was having his second round of heart surgery. We spent 10 hours pacing up and down corridors; we didn’t know how we could get through it. We were told he would either come through, or he wouldn’t.”
But he pulled through that, as well as two further operations and now at 14-years-old, Tom is needing a heart and lung transplant.
“Tom has been through so much,” said mum Nicky. “He is the most funny, loving and mature boy. He knows there is more to come but he takes it in his stride. He has a sensitive side, but he has a wicked sense of humour. He is such a star.”
For Nicky, and husband, Lol, their frightening journey began in December 2007 when Tom was two-days-old and a midwife thought there was an issue with his heart. When doctors realised it was more than a heart murmur, he was blue-lighted, with Lol, from the Royal Derby Hospital to Glenfield Hospital in Leicester – which specialises in cardiology.
“I wasn’t able to go with Tom as I was recovering from a C-section,” said Nicky. “Him being taken from me broke the bond we were beginning to make. I had two days with him and that was it. Tom’s sister, Tamzin, was four and she didn’t know what was going on. I was moved in to a private room in hospital. It was New Year’s Eve; Lol was very worried and also alone.”
On New Year’s Day, Tom had emergency open heart surgery and was put on life support. Nicky was able to go to him that evening. “He was in the bed sedated and ventilated, covered in wires. It was so difficult.
“Tom was in Glenfield for a couple of weeks and diagnosed with congenital heart disease. We were told this was our lives now. When he was recovering, one consultant said to us, just enjoy him. We do do that but to have someone say it, it was the fear of the unknown. We knew more was coming but we just got on with life.”
Tom had his next open heart surgery when he was 16-months-old. He struggled to recover and a week later the decision was made to open him up again.
Nicky said: “When he was recovering, I sat by his bedside, he was just so tiny, there were 13 drugs attached to him. It was just a mass of wires, we couldn’t cuddle him and that was all we wanted to do. His heart was so swollen, they couldn’t close his chest so they put a plastic cover over it until the swelling went down.
“There was a lot of fear over the unknown. Sometimes we got angry and thought why us? Tom didn’t seem strong enough and we didn’t know how to behave. We had to learn that it was okay to talk normally and laugh occasionally, otherwise we would just exhaust ourselves.
“Three months later he picked up an awful infection and he had to be sedated and ventilated. We nearly lost him that day. We were advised not to go home as they didn’t think he would make it through the night. But by some miracle he did. He turned a corner and he pulled through. He then began to recover and it was brilliant. It was amazing. He was coming to life.”
At the age of five, Tom had another operation and in 2017, Nicky and Lol were told nothing more surgically could be done. He would need a heart and lung transplant in the future. Then in January 2020, Nicky, Lol and Tamzin found our hospice. A place that Tom “loves” and never wants to leave.
“Rainbows is somewhere we can socialise with others and be ourselves,” said Nicky. “Rainbows is so much more than being able to stay there, they look after the parents. We go to a group, we have a fantastic family support worker who is at the end of the phone and the transition team are working with Tom as he approaches adulthood. I can’t imagine how we would get along without Rainbows. I think we would feel very alone and lost.
“This has been a rollercoaster of emotions. We felt robbed of our nice family life. Instead we had hours of walking up and down hospital corridors and travelling up and down the M1. But we just get on with it and this is all we have done since the start. You have to get on with life for the sake of the children and we are grateful we have Rainbows to help us with that.”
Rainbows is so much more than being able to stay there, they look after the parents. We go to a group, we have a fantastic family support worker who is at the end of the phone and the transition team are working with Tom as he approaches adulthood. I can’t imagine how we would get along without Rainbows. I think we would feel very alone and lost.