Just over a year ago, Ralph Tatham’s parents didn’t know whether they would make it to Christmas or whether liver cancer would take their three-year-old son.
Now the little boy is just weeks away from celebrating his fifth birthday after undergoing a life-saving multi-organ transplant to replace his liver, pancreas and intestines.
“It was the hardest moment of my life,” said his mother, Katie Tatham. ‘It’s a risky operation, so you don’t know if you’ll see him again. It was clearly his only chance to live to undergo this operation. But if you take out and replace a lot of his organs, there’s a good chance something will go wrong.”
She pauses for a moment. ‘I’m sorry, I don’t normally get this emotional. At that moment I only remember his face when we gave him up. And giving him a hug before his surgery. And he got scared because of the big room and all the people involved.
A few hours later, she and her husband, Graham, received a call from the surgeon: “We were able to see Ralph and it was such a relief, and an incredible moment to know that the surgery was successful and that he was still there. with us.”
The Tathams want more parents to experience that relief. There are 280 children in Britain waiting for an organ transplant, up from the 243 on the waiting list in September 2023, when the couple last spoke to the Observer.
The rules surrounding organ donation for children are different from those for adults, making it more difficult to find donors. Adults across Britain are now expected to agree to become organ donors if they die suddenly, although there is an opt-out register and relatives are always consulted first.
However, parents of children are always asked for permission before donating. About half of the families agree with this. Last year there were 39 organ donors under the age of 18. They, and several adult donors, gave 252 children the chance of a longer life with a transplant. But for eight children there was no life-saving call.
The reason parents often do not agree to donation is that at the worst time of their lives they are confronted with a decision they never wanted to make.
The NHS Blood and Transplant Service believes that if parents can bring themselves to imagine the unimaginable, they will be more likely to remember in the moment of crisis that they can give another family the chance at life.
Katie’s employers, the creative company Wunderman Thompson, started the Waiting to live campaign to encourage these conversations by placing hundreds of child dolls in waiting rooms, including 16 modeled after children on the waiting list.
“I think seeing stories of people like Ralph will hopefully provide some inspiration,” she says. “I hope people remember them, and when they find themselves in that terrible situation where they have to make the decision whether or not to donate, maybe they remember a child like Ralph and realize that they can make the choice to to save another child.”
Katie doesn’t know the identity of Ralph’s donor or their family, but she said she was “impressed by them.”
“It’s the most selfless thing you could ever do,” she says. “They gave our son another chance at life. If they had said no, it is unlikely that another donor would have come. It is rare for a child to be the same size. It is literally the reason our son is still here and fighting.”
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Before they got the call that the NHS had found a match for Ralph, the family had raised money to fly to the US.
“We were told Ralph didn’t really have much time left,” she says. “He became immune to his chemotherapy, and at any moment they could discover that his cancer had spread. We had given up hope, but then the donor call came in. I was shaking.”
It would be a fairytale ending to be able to write that Ralph has gone to school like any other four-year-old and fuels his current obsession with cars: ‘He likes Porsches, Lewis Hamilton, all those things – he knows them. like the back of his hand,” says his mother.
But life and medicine bring complications. “Ralph is still in protective isolation as he is still on high levels of immunosuppressants,” says Katie. He is dealing with graft versus host disease (GvHD), which means the donated organs treat Ralph’s body as foreign.
‘He still can’t get along with other children. We have to live Covid style, with isolation rules, which is quite difficult to be honest. It’s hard for him because he’s getting older now and he wants to see other children and do things that other children do.”
In between hospital visits, Katie and Graham try to manage their anxiety and enjoy their family, with days out at the seaside and woodland walks. “Ralph is just an incredible, cheeky, funny little boy, very intelligent. He has such a great sense of humor. And I think that’s what keeps us going. He really is an incredible mind.
“His brother Albie was still a baby, so he got to be a big brother for a year. We just try to live day by day. You find yourself constantly tense for the next bad news. So you just have to try to enjoy the days when you are not in the hospital. What other choice do you have? You just have to move on and enjoy life.”