During our Give to GOSH appeal, we introduced you to two-year-old Elliott, who had waited the longest period of time in the hospital's history before being able to start using an artificial heart.
Earlier this month, Elliott had his long-awaited transplant and has now moved home with his parents, Adrian and Candace.
Elliott lived on Bear Ward – a specialist ward for children with cardiac conditions at Great Ormond Street Hospital (GOSH) – for over a year. The hospital is the largest paediatric centre for surgery in the UK and also one of the largest paediatric heart transplant centres in the world.
A transplant at last
In March 2015, Elliott underwent major surgery to have a Berlin heart fitted. A year later, he finally received a heart transplant. Candace told us about how the transplant has affected her son: “We’ve noticed a few changes in Elliott since the transplant. Obviously there are the pronounced facial features from the steroids he is on, plus the increased appetite from his medication. Since recovering from his rejection treatment, he just seems naturally happier. It’s hard to explain, but his happiness just seems more natural.”
Describing what it was like to leave GOSH, Candace said: “I don’t think we actually believed this day would ever come – to actually leave the hospital. We had seen so many other transplant patients come and go in our time that we are resigned to ourselves to always be in the limbo of waiting for a transplant. I don’t think we actually believe it was happening until we were in the car and waving goodbye to everybody.”
“We are actually settling in much quicker than I expected. I thought Elliott would be a bit apprehensive at first, but he’s taken it all in his stride. He started exploring straight away when we arrived home and hasn’t stopped.”
Caring for Elliott
Rhiannon, the Senior Staff Nurse on Bear Ward, walked with the family to the hospital’s entrance and waved goodbye to them as they left: “The whole team on Bear Ward were so thrilled, it’s what we all work towards, we were all hoping and wishing for this. It felt surreal to finally say goodbye.”
"We're all really going to miss Elliott, he is so happy and smiley, he has such an amazing spirit and zest for life just like his parents," Rhiannon said. "His happiness is infectious and that's what we will all miss the most."
Elliott and his parents developed a strong relationship with the staff on Bear Ward during their time at "We try to make a family's time with us as nice as possible, but no one wants to live in a hospital for so long," Rhiannon said.
"It was such a privilege to witness the special moments in his life, like learning to walk with his Berlin heart and the development of his communication skills; he has even started to play the guitar, he’s really good. It was such a pleasure to look after him.”
The world outside Elliott's hospital room
After living at GOSH for over 13 months, Candace told us what she was looking forward to when the family found out they were leaving: “We’re looking forward to so much. There are the big things, like going on holiday, going to the beach, seeing dinosaurs at The Natural History Museum and going to the zoo, but we’ll have to wait and see how his biopsy results come back.
“There are little things that we haven’t enjoyed together as a family for so long – like sitting on the sofa together, cooking and eating together, going to the park whenever we want without needing to plan a trip around staff levels, waking up in the same house, looking out of the window at greenery, and allowing Elliott to see that there is more to bird life than mangy pigeons!
“I’m looking forward to seeing his eyes light up as he realises that there’s so much to see in the big bright world outside of his hospital room.”
Giving something back
Before Elliott was offered a transplant, Candace and Adrian wrote a letter of thanks to everyone who supported the charity during the Give to GOSH appeal: “Most parents want the best possible future for their children. For Elliott, we just hope for a future. Thanks to the continued public support for GOSH through campaigns like the Give to GOSH appeal, our hope, and Elliott, is still alive. Your donations have ensured that GOSH will remain a beacon of light and hope for families in their darkest hour.”
The family are now fundraising for GOSH. Adrian said "Hopefully my runs for the charity will be victory runs, celebrating the work GOSH has done to allow Elliott to go home and how amazing organ donation is to allow us this opportunity.”
At the end of May, Adrian is running 75 miles from their local community centre to GOSH to raise money for the charity. To find out more information about his challenge, or to sponsor him, visit his Just Giving page.