Elliott's transplant journey

Elliott's mother Candace remembers the moment she got the phone call about his transplant from Great Ormond Street Hospital (GOSH).

Elliott, who had been diagnosed with dilated cardiomyopathy (a disease of the heart muscle) at just 12 days had been kept alive on a mechanical heart at GOSH for more than a year waiting for a heart transplant.

“I saw a missed call from GOSH and I thought, if they’re ringing this early in the morning it’s either really good or really bad," says Candace. " I rang back and the transplant nurse said: ‘I’m sure you know why I’m calling,’ and I said: ‘You’re going to have to say it!’ " 

You feel frightened

“You feel so happy, but you’re also frightened because you know he’s going into a major operation," she says. "You also can’t help thinking there is a family who’s just lost their child and that’s why this is possible – they decided to make something good come out of that. You feel every emotion simultaneously.”

Elliott needed a large team to support him throughout his stay at GOSH. Physiotherapist Emma Shkurka met Elliott when he first came to the Cardiac Intensive Care Unit.

“His heart was failing, and he could barely stand," she says. "I looked after his lungs while he was ventilated by a breathing machine. I helped him cough and made sure he didn’t get a chest infection.”

Cheeky and smiley

The mechanical heart, known as a Berlin heart, is a heavy device, and his parents had training on how to look after Elliott on it. 

Maura OCallaghan
Maura O’Callaghan, lead nurse for the Berlin Heart, says: “My role was supporting the family and completing clinical assessments of Elliott and the Berlin Heart device. My team saw Elliott every day. The cannulas (plastic tubes) that went into his heart came out through the skin and sometimes became sore and needed dressing.

“Elliott built up relationships with all the nurses. He didn’t speak a lot back then, but he used a sign language that we understood. He was playful, smiley, cheeky – a real character. His mum and dad were amazing – so resilient. We became like extended family.”

Consultant Cardiologist and Transplant Physician Dr Jacob Simmonds was part of the team monitoring all of Elliott’s non-surgical needs. “When he felt well enough, I would take him to the playground behind the hospital on the Berlin Heart – which is not easy to do. The Berlin Heart moves like a huge shopping trolley, but it weighs twice as much.”

Staying strong

At times, the team feared they would not get a match because of the shortage of paediatric donors. Sarah Mead-Regan, Clinical Nurse Specialist and Recipient Transplant Coordinator, says: “As the months pass and there is still no donor, it becomes hard for the family to stay strong. It was particularly tough for his mum who didn’t leave the hospital the whole time Elliott was here.”

Sarah finally received the call she had been waiting for in the middle of the night. And then it was all systems go. “The transplant process involves 50 to 60 people. I was called at 1am with his transplant offer and he went to theatre at midday – that’s 12 hours of negotiating.

“I remember the phone call to the family telling them there was a donor,"says Sarah. "It was only a provisional offer at that stage, but it was a special call to make.

“As transplant coordinator you end up having a close relationship with the family because you’re waiting with them and supporting them through that long, difficult time. The actual transplant is an emotional event for both the team and, of course, for the family,” she says. 

Going from strength to strength

“When the transplant came it was a massive relief,” Dr Simmonds says. “The day he left hospital was great for everybody. Since then he’s gone from strength to strength.

“Now we see him in clinic every two months," he says. "His development is delayed because of the environment he grew up in, but his speech is really coming on. Every time we see him it’s a boost to see how he’s developing into a little boy.”

At times, the team feared they would not get a match because of the shortage of paediatric donors. Sarah Mead-Regan, Clinical Nurse Specialist and Recipient Transplant Coordinator, says: “As the months pass and there is still no donor, it becomes hard for the family to stay strong. It was particularly tough for his mum who didn’t leave the hospital the whole time Elliott was here.”

Elliott's Mum Candace remembers the day her little boy finally went home. “The transplant doctors walked out to the car with us and as we were saying goodbye, I started crying. They asked why, and I said: ‘Because there were times I didn’t think that this day was ever going to come. You’ve given me my son back.”