The two-year-old who has spent nearly half his life on a mechanical heart

Anna Davis @_annadavis20 January 2016

Elliott Livingstone is only two years old but he has spent 324 days of that time on a mechanical heart - more than any other patient at Great Ormond Street Hospital.

Today his mother told of the family’s long wait for a heart so that he can have a life-changing transplant - and she thanked the thousands of people who have donated to the Standard’s Give to GOSH appeal which aims to help more children like her brave son.

Elliott has been on a “Berlin Heart” since March 3 last year. Previously the longest a child had spent on the device at GOSH was 280 days. The Standard has followed the two-year-old throughout its appeal.

Elliott was diagnosed with heart disease at two weeks old and has been at GOSH since February 24 last year, but because he is so small it is hard to find a suitable heart for a transplant.

Strong: Elliott Livingstone at hospital in infection control
Great Ormond Street Hospital

The toddler is currently in isolation after he suffered an infection and is not allowed to play with the other children. He can only see family and hospital staff, who must keep to strict hygiene rules, wearing masks, aprons and gloves when around him.

Since Elliott was admitted his parents Candace and Adrian have watched other children come and go as hearts have become available. Mrs Livingstone said: “It feels a bit like we are the first ones in and the last ones out. It’s only natural to sit here thinking, ‘Why not Elliott? When is it his turn?’ But we always knew he would have a long wait because he’s so small and transplants don’t happen as frequently for children his size.

“We always try to look for the positives. He seems happier now he has his own space with more room for his toys. We just hope that one day soon will be the right time for Elliott.”

Elliott loves Peppa Pig and his room is full of pig cuddly toys. He often watches the cartoons on an iPad. His walls are lined with articles about Give To GOSH, showing pictures of the cheeky blond boy who has captured the public’s imagination.

Now he is in isolation there are no older children around to tell him to be brave. One had been his friend Marley, seven, and they formed a close bond during their time on Bear Ward. Marley, who called Elliott “his brother”, helped him through blood tests by telling him, from across their shared room, that he was a big boy.

Elliott’s new challenge is to get through a decent period of time without infection so he can put on weight — small children can generally receive a heart from a donor who was up to three times their own weight.

Mrs Livingstone said: “We really need to get him strong but it’s been hard because he has had one infection after another. We just need to keep him well and we hope lots of his favourite treats from Starbucks and Pizza Express will help.

“The most important thing is that Elliott is happy. I can never forget that this Berlin Heart, this ward and this hospital are allowing him this crucial wait time. He could never have waited this long without them so every day we have with Elliott is a gift.”

Great Ormond Street is the largest centre for paediatric cardiac surgery in Britain. Some of the money from Give to GOSH will go towards building a new heart unit at the hospital, which will help patients like Elliott.

Where your money will go

  • Funding the Louis Dundas Centre for Children’s Palliative Care, for patients who have life-limiting or life-threatening conditions
  • Supporting the creation of a new specialist unit helping children with heart failure to stay well while they wait for a heart transplant
  • Funding research programmes, which aim to find new cures and treatments for children with rare diseases
  • Funding the patient and family support programme at the hospital, including a dedicated play team which designs activities for children to aid their treatment, recovery and understanding of their illness. It also funds a wide range of other support, all helping to make life as “normal” as possible for families while children are in hospital, often for weeks or months at a time

Currently, a shortage of donors means one in three children on a heart transplant waiting list will die before an organ becomes available.

At the unit experts will carry out research into devices that can be im-planted in a child’s heart to help them stay alive until a transplant. They will also develop drugs to slow the process by which transplanted hearts wear out, and hormone treatments and devices to prevent the need for a transplant in the first place.

The appeal has now raised more than £2.7 million and Mrs Livingstone said: “It’s amazing so many people care enough to give that amount of money. It’s nice to feel some good is coming out of Elliott’s situation and it’s great to know that the new heart unit will help children like him in the future.”

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