Seven year old Hannah was born with Down's Syndrome but up until just before her second birthday she was fit and healthy and progressing well. Then she was diagnosed with Leukaemia and underwent intensive chemotherapy which left her with cardiomyopathy, a condition where the heart's function is impaired. In Hannah's case the left side of her heart was enlarged and not beating as powerfully as it should.
It was diagnosed in May and in July Hannah suffered severe heart failure and the only option available was a heart transplant. Thankfully things had changed from previous years and the fact that Hannah had Down's Syndrome was not a factor in the assessment for transplantation so she was placed on the organ waiting list. After waiting four months for a heart, a donor became available but during the night when things were being planned and co-ordinated, Hannah was taken ill and the operation was cancelled. By the end of that day Hannah was in a medically induced coma and on a life support machine (ECMO) which she would need to be on until another donor organ became available.
However, there is a limit to how long someone can be on ECMO and Hannah’s time on it was not good, she suffered a pulmonary hemorrhage, her lungs filled with blood and blood was running down the ventilator tube. The Freeman Hospital where Hannah was being treated was pioneering the use of artificial hearts that operate outside of the body, called Berlin Hearts and her parents were desperate for Hannah to have one so she could have a better quality of life. They wanted to see her awake and also saw this as a way of providing a longer bridge to transplant, because the survival time on a Berlin Heart is much longer than on ECMO.
When Hannah was fitted with the Berlin Heart the operation did not go well, as afterwards they were unable to get her off the heart and lung bypass machine. The surgeons told her parents they believed it would be kinder to let her go, but not prepared to accept that, her parents asked them to keep her on bypass overnight and try again in the morning. The surgeons agreed but said there was no chance of her surviving and that she would die within minutes of the by-pass machine being switched off, however Hannah proved them wrong and held her own and stabilised over the course of the day.
Finally after eight months, Hannah got her donor heart and became only the second child in the UK with Down's Syndrome to have a heart transplant.