Joe underwent a successful heart transplant at Great Ormond Street Hospital (GOSH) last year after spending nine months in hospital attached to a Berlin Heart, a machine the size of a small chest freezer, which supports the work of the heart and acts as a life-saving bridging device for children awaiting a transplant.
When Joe was three weeks old, his mum, Rachel, woke one morning to find him grey. He was rushed to the Evelina Children’s Hospital where doctors diagnosed him with dilated cardiomyopathy (DCM).
When his health deteriorated rapidly in December 2009, Joe was diagnosed with Barth syndrome, a condition linked to the X gene which causes muscle weakness, short stature and feeding problems. By December 2010, Joe began showing signs of heart failure. Rachel and Mark were told he would need a transplant and he was placed on the waiting list.
A few days later, Joe had a rapid decline in health and had two cardiac arrests in hospital. Within half an hour Joe arrived at GOSH, where he suffered another cardiac arrest. Doctors were able to resuscitate him for a third time and he was placed onto an Extra-Corporeal Membrane Oxygenation (ECMO) machine, which could temporarily do the work of his heart and lungs to give them a rest.
Thirty-six hours later, Joe was stable enough to be attached to a Berlin Heart.
Life on a Berlin Heart
Rachel explains: "Joe went through so much in such a short space of time, but once he was on the Berlin Heart we started to see his character coming back. We took things one day at a time, while we waited for a heart to become available.
"When Joe passed the 200-day mark on the Berlin Heart we started to really question what else could be done if a heart wasn’t found, but we knew deep down there wouldn’t be much.
"On day 251 the call we had been waiting for came. We were offered a heart for Joe. The call came early in the morning and time seemed to stand still before he was taken down to theatre.
"Thankfully, Joe’s operation was successful. Seeing his new heart – a normal size and thumping away in his chest, was incredible. None of it would have been possible without the selfless generosity of the donor family.
Dr Giardini, Consultant Paediatric Cardiologist at Great Ormond Street Hospital said: “We are really delighted to see Joe doing so well and thriving at home. He spent a long time with us in hospital.
"Joe was very lucky to be able to have a heart transplant. There is a chronic shortage of donor organs for children in the UK and at any one time we have several children in the hospital awaiting a transplant. Lots of children wait years for an organ to become available and can very sadly die while they are doing so."
Becoming an organ donor
Joe’s parents, Mark and Rachel, have urged families to discuss organ donation and to join the NHS organ donor register.
Rachel said: "We are eternally grateful to the donor family. We cannot imagine what they went through. Their generosity of thought at such a horrendous time is completely selfless and amazing.
"We would also like to thank all of the staff at GOSH for what they have done for Joe, but especially his consultant, Dr Alessandro Giardini, and the nurses on Ladybird Ward.
"Organ donation is a topic everyone should discuss. It is not just those with conditions present from birth who end up needing transplants. Some children, like Joe, will become very sick, very quickly."