Transplant survivor:
Hannah Jones made headlines when she went to court to insist on her right to die aged just 13, but now she’s healthy after a heart operation and is training to be a teacher
“I fought for the right to die – but I’m glad I changed my mind”
When student Hannah Jones W graduated from Aberystwyth University in July, it was a day full of pride – and a milestone she thought she might never see. Because in 2007, at the age of 13, she fought – and won – the right to die and turned down a heart transplant.
Hannah needed the lifesaving operation as she’d suffered from leukaemia as a child, and the chemotherapy – while a success – had seriously weakened her heart.
Hannah says: “Doctors were shocked when I said I didn’t want the transplant because I was so young – but I was sick of being in hospital. My parents were sad but they supported my decision.”
However, just before her 14th birthday, Hannah changed her mind and decided she wanted the transplant after all.
She says: “I suddenly realised that I had a lot to live for. I wanted to go to my school prom and one day travel the world.”
MONTHS TO LIVE
The English and Drama graduate, now 22, lives in Bath and is dating PHD student Sum, 28.
Hannah, who is studying to become a teacher, says: “I’m so excited for the future – changing my mind was the best thing I ever did.”
After successfully battling leukaemia, which she developed aged five, Hannah spent the following eight years in and out of hospital with heart problems. Then, when she was only 13 years old, doctors gave her just five months to live.
Hannah says: “Doctors sat my family and I down and said a heart transplant was my only option. But I didn’t want it so I asked not to be put on the transplant list, even though I knew it meant I would die.
“It sounds like a dramatic decision but I was just so sick of being stuck in hospital. I wanted to go home and try to live whatever life I had left normally.”
Hannah was allowed to go home in July 2007, but seven months later her health deteriorated rapidly and doctors once again brought up the subject of a heart transplant.
Hannah’s mum Kirsty, now 51, was by her side when, once again, her daughter refused the operation to save her life. Doctors immediately lodged a complaint and Hereford Hospital threatened to launch High Court proceedings to remove Hannah from her parents’ custody so treatment could be carried out.
The 13-year-old made legal history when she pleaded her case and, in November 2008, the hospital dropped the case.
But in July 2009 Hannah suddenly had second thoughts.
SUDDEN REALISATION
Hannah says: “I know it sounds crazy that I could change my mind like that, but when the case was over the reality of dying suddenly hit me. I began to think about my future and what I wanted to do.
“People started talking about going to prom at the hospital school I went to. Prom is every girl’s dream – getting
❛I REALISED I HAD A LOT TO LIVE FOR – I WANTED TO GO TO THE SCHOOL PROM AND TRAVEL THE WORLD❜
the perfect dress and looking pretty. It suddenly dawned on me that I wanted the chance to do that, so I had to live and told my family I wanted the transplant after all.
“My mum was, of course, over the moon, but she said she would have supported whatever decision I made. She just wanted me to be happy.”
Just before her 14th birthday, Hannah was placed at the top of the donor list and by the end of the month a heart became available for her at Great Ormond Street Hospital.
She says: “In the weeks leading up to the transplant, I was so ill I was already in hospital and unconscious a lot of the time. The transplant was a six-hour operation and I was scared, but I couldn’t be more thankful to the family of my donor for giving me the opportunity to live.”
All Hannah knows is that her donor was a Scottish male who passed away in a road collision.
Hannah says: “The surgery was a success, but doctors struggled to close my chest after the swap. I was kept in the recovery room for three weeks, with just a cling film-like sheet to cover the gaping hole until it healed.”
It took three years for Hannah to recover from the operation and build up her strength. But she was able to go to the prom in a pink, floor-length gown in 2011. She says: “It was amazing to fulfil my dreams.”
FUTURE HOPES
Hannah – who is a keen dancer – graduated this summer from university surrounded by friends and family and now hopes to become a performing arts teacher.
She says: “I have to look after myself – I don’t drink alcohol and I eat healthily. I also have to take 10 pills a day to suppress my immune system so it doesn’t reject my new heart, and I have check-ups every six months.”
She adds: “I’m so grateful to be given the opportunity to finally live a normal life without any stress. I want to teach, I want to travel and then one day hopefully get married and have kids. I’m so glad I changed my mind and lived.”