Organ donation ‘taboo’ must be tackled says woman who lost son and husband

Anna-Louise Bates has a special bond with little Roman, and she’s not exaggerating when she says he has a “magical heart.”

His heart is actually the heart of his son Fraser, who died after being hit by a car 10 years ago on Saturday.

Mrs Bates lost her husband Stuart and Fraser of seven years. While crossing the road after the accident Talbot Green is in Rhondda Cynon Taf.

Also, 10 years have passed since Groundbreaking organ donation law passed in WalesWe aim to increase the number of donors.

One academic said it had little impact and Ms Bates wanted more to be done to break the taboo around donating and help save children like Roma.

A charity founded by Mrs Bates. Believe Organ Donation Supportrecently opened a memorial garden at Thornhill cemetery in Cardiff; Here there are fruit trees and clumps of grass in the shape of organs such as hearts, livers and kidneys.

“I now have a very close bond with Roman’s mother and she is incredibly supportive,” he said.

“We have a magic heart that joins us, and for him to be there with what I call Roman’s heart… and he carries on with that joy and fights so hard.”

Ms Bates added that it was “remarkable” that the donation of Fraser’s organs had made such a difference and that it proved “the heart can actually go on”.

Roman’s mother Zoe described the agonizing 10-month wait for a heart transplant and the “emotional rollercoaster” the family didn’t think would happen until they received the call.

On 1 December 2015, Wales became the first UK country to adopt “soft” opt-out legislation, which assumes a person has consented to donating their organs when they die, unless they or their family indicate otherwise.

The organ donor consent rate increased by nearly 15 percent in the law’s first three years, but fell to its lowest level in a decade last year.

Ms Bates believes stigma around the issue is a problem and that it is important for people to have potentially difficult conversations with their loved ones.

Her husband and son died a few days after the law went into effect.

The Bates family, including their then-three-year-old daughter Elizabeth, had attended a Christmas party.

Stuart, a 43-year-old IT program manager, was pronounced dead at the scene and Fraser was taken to hospital where he was later transferred to Bristol Children’s Hospital, where he died from head trauma.

Ms Bates said she spoke to her husband less than three weeks ago about signing up to the organ donor register.

This conversation meant that when he was approached about donating his organs, “it was the one point in that 24-hour period where I didn’t have to think and I knew what they wanted me to do.”

“I’m so grateful that even in that craziness, I was able to honor their wishes,” he said.

Miss Bates said losing her husband and son was “everyone’s worst nightmare” and that “even after 10 years it still doesn’t feel real”.

“One minute you have a beautiful family of four and the next moment you’re being asked these questions,” he added.

Ms Bates said she did not expect to be asked to consent to organ donation because she thought “soft” opt-out legislation meant it was not required.

He said he feared others might think the same thing, which meant there was less talk about the issue.

“What we really need to tell people is just because the law has changed doesn’t mean it’s as easy as you think,” he said.

“These talks need to be held strongly.

“I’m afraid to think about how I would have felt or what feelings I would have felt if I hadn’t had that conversation with Stu.”

This was one of the reasons he set up the charity, describing organ donation as a “taboo subject” where people were “scared to talk about it”.

Ms Bates said that in her experience, children tend to view organ donation as “the gift of life”, while adults probably avoid talking about it because they associate it with death.

Organ donor consent rate now down lowest level in the last 10 years.

NHS Blood and Transfusion service (NHSBT) said presumed consent was not a silver bullet to bridge the gap between donation and transplantation.

Reasons for the decline in recent years included the Covid pandemic, fewer major media campaigns, limited resources and possible distrust of healthcare services.

Leah McLaughlin, a health scientist at Bangor University in Gwynedd, said: “We also need more messaging in everyday life so this can translate into more of the normal expected end of life care, which NHSBT is also trying to do, but we need the infrastructure to support those messages.”