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UK's World-first Paediatric Heart Transplant Technique

Two UK hospitals have collaborated to expand the donation after circulatory death (DCD) heart transplant programme to children.

Doctors behind the scheme said the world-first paediatric heart transplant technique, previously only available to adults, has enlarged the donor pool and increased the number of transplants for eligible children by 50%.

The programme is a partnership between Great Ormond Street Hospital (GOSH), the Royal Papworth Hospital (RPH), and NHS Blood and Transplant.

'Reanimating' the Heart

The procedure uses a portable organ perfusion system called the TransMedics heart Organ Care System (OCS). It allows doctors to reanimate the heart, medicate it, and keep it beating outside a human body, keeping it healthy whilst it is transported to the recipient patient.

It is currently the only medical device capable of making DCD heart transplantation a clinical reality.

Jen Baxter, lead nurse, organ retrieval/RPH

A heart treated in this way can also be transported greater distances, giving health professionals time to assess heart function and medicate it if necessary.

Crucially, the DCD programme allows retrieval of organs for transplantation from a donor weighing at least 50kg whose death is diagnosed and confirmed using cardio-respiratory criteria, and following consent by the donor's family.

The partnership involves a team at RPH in Cambridge retrieving the heart, and another team at GOSH implanting the organ.

Waiting Times

Currently, children face longer than average wait times due to the difficulty of finding the right match and because the consent rate for paediatric organ donation is much lower than the national average for adults.

GOSH currently has 24 children waiting for a heart transplant. Between 2014 and 2019, the average waiting time was 282 days.

The technique has been described as a "promising solution" to the shortage for children who are capable of receiving an adult heart.

Six paediatric heart transplants were performed under the programme on children aged between 12 and 16 in 2020, boosting the total number of transplants at GOSH to a record 24, despite the COVID-19 pandemic.

Work is underway to develop a new machine, the mOrgan, that will enable DCD heart donation from younger, smaller children.

Commenting on the programme, Dr Jacob Simmonds, consultant cardiologist and transplant physician at GOSH, said: "With the DCD heart programme we have unlocked more opportunities for donation, essentially doubling the number of transplants done at GOSH in eligible patients weighing over 20kg. It's game-changing and work is already underway to make the technique suitable for our much younger and smaller patients."

Mr Marius Berman, consultant cardiothoracic transplant surgeon at Royal Papworth Hospital, said: "No one else in the world is currently doing this. It's been an incredible multi-institutional and multidisciplinary team effort to make this possible, involving everyone from the specialist nurses in organ donation and retrieval, transplant coordinators, physicians, and surgeons.

"Above all, none of this would be possible without the generosity of every donor and their families.

"Truly, it showcases the best of the NHS and what can be achieved when we come together for the benefit of our patients."

Anna's Story

The first child to receive a DCD heart transplant under the scheme was Anna Hadley, who is now 15.

In January 2018, Anna was diagnosed with restrictive cardiomyopathy after collapsing during a PE class. Anna and her parents were told that if she did not receive a heart in time, she would need a heart-lung transplant.

Towards the end of 2019, Dr Simmonds spoke with Anna's family about the upcoming transplant programme that was already well established for adults. After 20 months on the waiting list, and with the family's agreement, Anna underwent surgery.

Anna's father said: "After weighing-up the potential risks and benefits of the DCD heart transplant with a more conventional one, we realised that there was only one choice, and we're so glad we made it. Five days after the transplant, Anna was walking up and down the corridors chatting away and high-fiving staff. It was incredible."

Freya's Story

Freya Heddington was 12 when she, too, was diagnosed with restrictive cardiomyopathy that left her weak, short of breath, and prone to fainting.

She said: "I remember when they first told me about my heart. It was scary because I didn't know what it would mean. Would I be able to go to school, see my friends, do all the things I still loved to do like ride horses?

"I knew that the transplant would be a big operation and that it was my best chance at getting back to normality."

Around 6 months after being listed for an urgent heart transplant, Freya became the second child to receive a heart transplant under the DCD programme.

Speaking about her surgery, Freya said: "For me, it happened a lot quicker than for most children.

"I'm so grateful to my donor and their family for this second chance. When I woke up from the surgery I felt like I could finally breathe again."

DCD Heart Transplants for Adults

The DCD transplant programme has been available to adults since March 2015.

According to Royal Papworth Hospital NHS Foundation Trust, it has increased adult heart transplant activity at the hospital by 48% in 5 years.

It said that over the 5 years following the breakthrough, the retrieval team at Royal Papworth Hospital were called to 128 DCD heart donors, with 79 of these call-outs ultimately leading to a transplant.

A 2020 paper published in The Journal of Heart and Lung Transplantation found that following DCD transplant, 30 day survival was 97% versus 99% for the matched donation after brain stem death (DBD) group. Their one-year survival rate was 91% compared with 89% for the DBD group.

Time spent in critical care was also comparable, with DCD recipients spending 7 days in critical care compared with 6 days for DBD recipients.

John Forsythe, medical director for organ donation and transplantation at NHS Blood and Transplant, said: "We have supported the DCD heart programme from the early research stages. It means some people can donate their hearts, as well as other organs, where it wouldn't have been possible in the past, giving life to patients on the waiting list.

"This new technology is a significant step forward in heart transplantation in the UK and, indeed, the rest of the world."

https://twitter.com/RoyalPapworth/status/1363391420879536131?s=20

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