How a new heart unit at GOSH will help children like Elliott

Elliott has spent nearly a year at Great Ormond Street Hospital (GOSH). In fact, no child in the history of the hospital has spent as long on an artificial Berlin heart as Elliott has.

Elliott underwent major surgery in March to have the artificial heart fitted, but he desperately needs a new heart.

Since March, Elliott and his parents have had to watch as other children and their families on Bear Ward get the life-changing call from the transplant nurse to say that a heart has become available. Elliott’s family has watched those children recover and wished them well as they went home.

Elliott’s mum, Candace 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?” One of those children was Marley who formed a close bond with Elliott during their time together on Bear Ward. Marley, who called Elliott “his brother”, would often help him through blood tests in their shared room by telling him that he was a big boy. Marley had a successful transplant last year and left GOSH in October.

Candace said, “We always knew Elliott 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 and 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’s long stay at GOSH has exposed him to other illnesses and a series of sickness bugs. He’s prone to infection and the risk of stroke while he is on the Berlin heart. In the past, he’s taken strength from Marley and other children on the ward, but Elliott is currently in isolation with a bug. He’s under infection control which means he can only see his family and hospital staff, who must adhere to strict hygiene rules and wear masks, aprons and gloves.

The Independent and Evening Standard’s Give to GOSH appeal has been following Elliott since November and his walls are covered in newspaper cuttings from the appeal. His mum was thrilled at the recent news that the appeal had hit £2.7m with three weeks to go. She said, “It’s amazing that so many people care enough to give that amount of money. It’s nice to feel that some good is coming out of Elliott’s situation and it’s great to know that the new heart unit being built will help children like him in the future.”

The new 14-bed unit is a priority for GOSH and will be supported by the Give to GOSH appeal. It will help research and develop innovative devices that can be implanted in a child’s heart to help patients like Elliott stay healthy until they get a transplant. It will also enable research to develop the drugs that slow down the process of a transplanted heart wearing out, as well as creating new hormone treatments and devices that may one day make transplant unnecessary.

Despite his mother’s clear joy at the success of the fundraising appeal, her focus remains on her family’s battle to get Elliott a new heart. Part of this battle is to get Elliott through a solid period without infection so he can put weight on (small children can generally receive a heart from a donor three times their own weight).

Candace said, “The most important thing is that Elliott is happy and I can never forget that this Berlin heart, this ward and this hospital are allowing him this crucial wait time.”

Support our appeal

To support the work of GOSH, donate to the Give to GOSH appeal.

This article was originally published in the Independent on 20 January 2016.