04.10.2022

Brave youngsters whose lives were saved by a hi-tech heart in a box

These four youngsters are alive today largely thanks to ground-breaking technology — the ‘heart in a box’, or the organ care system — which allowed them to undergo life-saving heart transplants.

A donor heart is usually transported on ice, and surgeons have to restart it before it’s transplanted.

However, the lack of a warm blood supply means the tissue swiftly deteriorates, so the donated heart can be kept this way for only four hours.

But with the organ care system — which looks like a small incubator fitted to a wheeled cart — the heart can be diffused with blood, oxygen and nutrients and remains beating.

This increases the time it can be out of the body — up to 12 hours — so donor organs can come from farther afield.

A donor heart is usually transported on ice, and surgeons have to restart it before it’s transplanted. However, the lack of a warm blood supply means the tissue swiftly deteriorates, so the donated heart can be kept this way for only four hours. A file photo is used above

The system can also maintain a heart that has stopped beating, meaning hearts can be used when, for example, a patient has had a cardiac arrest, rather than only when the donor has been declared brain-dead but their heart is still beating.

This increases the number of donor hearts available — a huge breakthrough for children who need a size-suited heart for their body, which can make it even harder to find a match.

Children wait two-and-a-half times longer than adults for a heart and are on the waiting list for 88 days on average, rather than 35.

Jacob Simmonds, a consultant cardiologist and transplant physician at Great Ormond Street children’s hospital in London, says the technology has enabled them to double the number of heart transplants.

‘It’s game-changing,’ he says. ‘Every day a child waits, there is a bigger likelihood they may get too ill for transplantation.’

First used in 2015 in adults, surgeons in the UK began to use the box technique for children in 2018 — with Aaron Hunter the first to benefit.

Since then a dozen children have benefited. Here, their families reveal how their lives have been transformed as a result.

First child to benefit

Aaron Hunter, ten, lives with mum Stephanie, 28, a carer, in Bo’ness, near Falkirk. She says:

After Aaron had his seven-hour heart transplant operation in 2018, I remember looking into the intensive care unit and seeing his skin was pink for the first time in his life. He looked amazing.

Aaron was rushed to Birmingham Children’s Hospital by helicopter shortly after his birth; his skin was blue. Doctors said he had hypoplastic left heart syndrome, which meant he only had half a working heart. At a day old, he underwent an operation to replumb the heart so the right ventricle [lower chamber] could pump blood to the body [usually it only pumps blood to the lungs].

He underwent two other operations, but by the age of three it was clear it wasn’t working, so they had to reverse what they had done in a 19-hour operation.

I was told to say goodbye to him. He had a stroke, but pulled through. I was warned Aaron wouldn’t live past another 12 months. But, amazingly, he got a bit stronger. Two years later he started school. He would get breathless and tired, but he was still reaching his milestones.

At five, he was assessed for a heart transplant — he’d been deemed too poorly before. It was nearly three years before a heart was found in early 2018. And without the ‘heart in the box’, the organ wouldn’t have been able to get to him in time.

Aaron was the first child they tried it on, which was daunting, but it was his only chance of survival. To look at him now you would never know what he’s been through. I still pinch myself when I see him running around the playground.

Aaron Hunter, ten, lives with mum Stephanie, 28, a carer, in Bo’ness, near Falkirk. She says: ‘After Aaron had his seven-hour heart transplant operation in 2018, I remember looking into the intensive care unit and seeing his skin was pink for the first time in his life. He looked amazing. Aaron was rushed to Birmingham Children’s Hospital by helicopter shortly after his birth; his skin was blue. Doctors said he had hypoplastic left heart syndrome, which meant he only had half a working heart’

No long wait

Freya Heddington, 14, lives in Bristol with parents Jason, 52, a physiotherapist, and Katie, 57, a veterinary nurse, and her sister Olivia, 18. Jason says:

When we got the call telling us a heart had been found for Freya, we were surprised — she had spent just eight weeks on the transplant list.

If it hadn’t been for this new technology she could have been waiting much longer and may have ended up too poorly to survive surgery.

We had been so shocked when, in August 2019, the doctors told us she had restrictive cardiomyopathy — where the left heart ventricle wasn’t contracting properly. She hadn’t seemed poorly, just breathless.

When they started talking about her needing a transplant to survive, we couldn’t believe it.

Within weeks she became more breathless and exhausted. She would fall asleep as soon as she got home from school.

In early 2020 she was put on the waiting list for a transplant. We’d been braced for a long wait and then got the call after two months.

We were told the heart had been kept alive without being on ice, otherwise they couldn’t have transported it so far.

The heart was a good match and Freya’s now at school full time and horse riding, too.

Freya Heddington, 14, lives in Bristol with parents Jason, 52, a physiotherapist, and Katie, 57, a veterinary nurse, and her sister Olivia, 18. Jason says: ‘When we got the call telling us a heart had been found for Freya, we were surprised — she had spent just eight weeks on the transplant list. If it hadn’t been for this new technology she could have been waiting much longer and may have ended up too poorly to survive surgery’

Bleakest time

Anna Hadley, 16, lives in Worcester with her parents Andy, 50, who works for a manufacturing company, and Amanda, 42, a nursery assistant, and her sister Molly, 21. Andy says:

The school rang us in January 2018 to say Anna had collapsed in her PE lesson. Tests showed her heart was enlarged on the left side, and she was diagnosed with restrictive cardiomyopathy.

It caused her to black out because of a lack of blood going to the brain.

We were referred to Great Ormond Street Hospital and told that she had only a two-year life expectancy without a transplant. It was our bleakest time.

Twelve months later, Anna was struggling to walk upstairs and time was running out.

Then we got the call at 2.45am one morning to say an ambulance was on its way for Anna. Her donor heart arrived by helicopter.

Now, she’s back playing hockey and has a part-time job. We’re so grateful to the donor’s family. It is thanks to them, we still have our daughter.

Anna Hadley, 16, lives in Worcester with her parents Andy, 50, who works for a manufacturing company, and Amanda, 42, a nursery assistant, and her sister Molly, 21. Andy says: ‘The school rang us in January 2018 to say Anna had collapsed in her PE lesson. Tests showed her heart was enlarged on the left side, and she was diagnosed with restrictive cardiomyopathy’

We had lost hope

Elle Elliott, 14, lives in Derby with her mum Sam, 38, a care assistant, brother Dylan, 16, and twin, Jay. Sam says:

Elle was 12 weeks old when she was diagnosed with severe mitral valve stenosis, a narrowing of one of the heart’s main valves, blocking blood flow into the heart.

She had started going grey around her lips and within hours she had been diagnosed and blue-lighted to hospital. There, they operated to put a hole in one side of her heart which would allow the blood through.

After that, she had more surgery to try to construct a connection between two major blood vessels, but it wasn’t successful.

Two years ago, the doctors said her only chance was a heart transplant. By the time we got the call, she was so weak, she was sleeping all the time. I was losing hope.

We were told it was a heart in a box after the transplant, and it really is remarkable. Because the donor heart came in the box, not on ice, it could come from more than four hours away, which made the difference between surgeons finding her a new heart when they did and not being able to.

Elle has since gone from strength to strength. We were so happy she got her second chance, but we know that at the same time it’s a double-edged sword, as someone else had to lose their loved one.

Elle Elliott, 14, lives in Derby with her mum Sam, 38, a care assistant, brother Dylan, 16, and twin, Jay. Sam says: ‘Elle was 12 weeks old when she was diagnosed with severe mitral valve stenosis, a narrowing of one of the heart’s main valves, blocking blood flow into the heart. She had started going grey around her lips and within hours she had been diagnosed and blue-lighted to hospital’

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