Child organ donation: 'We need parents to think the unthinkable'

A new photo project has been launched to raise awareness of the difficult issue of child organ donation. To coincide, the BBC has spoken to a family whose 19-month-old girl needs a heart and are asking prospective parents to consider the unthinkable.

Beatrix lives in hospital, her young life sustained by a machine.

Milestones of her childhood - her first steps, words and teeth - have all occurred on her ward.

"She is growing up, turning into a little girl, hitting the terrible twos," her father Terry says with a laugh.

Beatrix needs a new heart, she is one of more than 200 UK children awaiting a life-saving organ transplant, but with only about 50 donors a year the wait is long - and some might not survive it.

The problem is not a shortage of potential donors, but rather the first time most people are asked about allowing their child's organs to be donated comes at the most devastating time of their lives.

Beatrix's parents are spearheading a campaign to get people to consider the unimaginable long before they may ever have to make the decision, namely, what would happen to their child's organs if they died?

It's a plight Terry and Cheryl from Burnopfield, County Durham, know both sides of.

In 2018 their daughter Isabel was still-born.

Doctors asked if they would donate her organs, Terry immediately refused but Cheryl said yes.

"Cheryl was right," Terry says. "The difference between us was I had never even thought about it, while Cheryl had previously discussed it and made a decision long before.

"Losing a child is just the worst thing imaginable, and my instant response was to be protective of her. I did not want anyone touching her.

"I was in no state to even think about it, but because Cheryl already had, she said 'of course we will help'."

They want doctors and midwives to ask prospective parents to think about it before their children arrive, and to even teach lessons in school to the parents of the future.

"It's such a traumatic thing, so we are asking people to simply think about it before they ever actually find themselves in that situation," Terry says.

"The reality is it needs to be talked about because if things do not change and we do not make it easier to talk about, more children are going to be waiting longer and longer with their outcomes getting worse."

Beatrix is one of the first subjects of a new project by award-winning photographer Debbie Todd, who has previously captured and celebrated people's differences.

"Child organ donation is a subject that isn't talked about very much and the number of donated child organs is very low because of this," Debbie says.

"Getting people thinking about what they would do is key."

She has also photographed two-year-old Grace Westwood who had a heart transplant earlier this year after two years of waiting.

She is now appealing for other people and children who have undergone heart transplants, surgery or organ donations to take part in her project.

For Beatrix, the wait goes on at Newcastle's Freeman Hospital where she is attached to a so-called Berlin heart, a pump which replicates her heart and keeps her alive.

"This isn't just about our daughter. It's about helping all children now and in future," says Terry.

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