Families of kids in need of heart transplants ask parents to 'make most selfless decision'

  • Watch ITV News Tyne Tees reporter Emily Reader's meet the families desperate to raise organ donation awareness.

The families of five children in desperate need of new hearts are joining together to raise awareness of organ donation.

The youngsters' families hope that going public collectively will encourage people to think about organ donation.

The five children - all under 8 and on an urgent waiting list for life-saving heart transplants - are being treated on Ward 23 of the Freeman Hospital in Newcastle.

The Freeman Hospital in Newcastle is one of two specialist centres in the UK that carry out heart and lung transplants for children.

The families of Beatrix Adamson, Luke Myles, Ethan Mains, Nour Hussein and Leyla Bell want to raise awareness of organ donation. Credit: ITV Tyne Tees

Families travel across the country for its expert care.

Savana Bell, from Manchester, is mum to 10-month-old Leyla Bell.

She told ITV News Tyne Tees having a child on on the transplant waiting list is extremely scary and emotional.

She said: "I don't want it to come across in the wrong way, because we're not sat around waiting for someone else to lose their child. We're sat hoping that when somebody's told their child's not going to make it, they make the most selfless decision of their lives.

Ms Bell added: "Transplant's are not a cure it is our palliative care, but it would give her that quality of life outside these four walls so she could come home to her family."

  • Savanah Bell is desperate to find a new heart for her baby.

According to the NHS Blood and Transplant Service, hundreds of children in the UK need an organ transplant with around 50 of those waiting for a heart.

Children needing a heart transplant rely on the organs of other young donors to save their lives.

Emma Simpson paediatric care consultant at the Freeman Hospital.

She told ITV News Tyne Tees that the conversation around donation often takes place in very difficult circumstances - but it has to, because once a narrow window is missed an organ cannot be transplanted.

According to Ms Simpson, the latest figures show that a child on the urgent transplant list is waiting on average 91 days, But that could be longer or shorter depending on individual circumstances.

It is thought that average will rise by the time the next statistics are released, with Ms Simpson adding that children seem to be waiting longer than previously.

Cheryl Adamson with her 18-month-old daughter Beatrix Adamson-Archbold Credit: Owen Humphreys/PA

This is especially worrying for Terry and Cheryl Adamson from County Durham.

They lost their baby Isabel in 2018 to a heart defect. Mrs Adamson said she was hoping for any other diagnoses than a problem with the heart.

Their 18-month-old daughter Beatrix is being treated on ward 23, which they say provides a real sense of community and support system at time that is extremely uncertain.

Mrs Adamson said: "It's really hard to deal with, I think your expectations just have to be 'when it will happen it'll happen,' and just hope it will happen.

"When we came down from PICU - the intensive care - it really hit home that this is where Beatrix lives. This is her home, these nurses are her family, these children are her brothers and sisters and we don't know how long it's going to be for.

"It really hit when leaving the intensive care and coming into the high dependency unit, knowing we're here until either she's granted the gift of a second chance or she dies. That is the reality that you're living with."

  • Cheryl Adamson has already lost one child.

Claire McGraith is a children's ventricular device specialist at the Freeman Hospital. In her job, she teaches parents about Berlin devices and how to change dressings so families can try and live as independently as possible.

A Berlin Device is a machine which takes over the function of the heart for some of the sickest children.

This can mean it functions for the left, right, or both sides of the heart whilst the patient waits for a transplant.

  • Children's ventricular device specialist Claire McGraith.

Ms McGraith told ITV News Tyne Tees: "We do get that special bond with the children and the families, and it is a joy to see when they do get transplanted.

"I think we do get that sense of grief for the other family as well, that someone on their worst day ever has made the bravest decision in helping the children and families we're helping to look after here."

The NHS Blood and Transplant service has said it is important to talk to loved ones about organ donation so if the time comes, people understand what decision should be made.

Find out more about organ donation in the UK here.

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