Hannah Jones: Why I decided to choose life
ASK any parent what they would do if their 13-year-old refused life-saving treatment and most would say they’d overrule them, insisting they were too young to make such a decision. Yet when desperately ill Hannah Jones declined the offer of a heart transplant her mum Kirsty and dad Andrew supported her.
After spending much of the previous nine years in hospital, first battling the leukaemia she was diagnosed with aged four and then the weakened heart caused by the chemotherapy, Hannah had decided enough was enough.
She was sick of taking drugs, sick of being attached to so many tubes, feeling tired and unwell and mostly sick of spending school days and birthdays on a hospital ward.
She wanted to go home to the Herefordshire farm she shared with her mum Kirsty, 43, her auditor dad Andrew, 44, siblings Oli, now 13, Lucy, 11 and five-year-old Phoebe and their menagerie of horses and cats, even if only for a short while.
“I just wanted to enjoy my life,” says Hannah. “I wanted to be where I was happy. I understood I might die.”
Even when the hospital where she was being treated instigated proceedings to see her legally removed from her parents and forced to take drugs that would keep her alive, Kirsty stood firmly behind her daughter. Hannah overturned the legal challenge and was allowed home.
It is therefore something of a surprise today, more than 18 months on, to hear Hannah talking excitedly about her upcoming holiday in Cornwall, what she hopes to do as a career (singing, writing or drama) and her favourite band JLS.
In July 2009, eight months after she refused a transplant, she changed her mind. Her reasons are simple. When she stopped taking life-saving drugs and went home to spend time with her family, she started feeling stronger and glimpsed how good life could be.
She met Prince Charles and went to Disney World in Florida. She accompanied her horse-mad sister Lucy to showjumping competitions. She went on holiday with her family and spent time with her friends. “I saw what life was like without being in bed every day,” says Hannah. “I realised I wanted more of the good times. I wanted to go on holiday and do my GCSEs.”
So last June, when Hannah’s doctors feared for her life, she decided to choose life over death and go ahead with a transplant.
A few weeks later a donor heart became available and Hannah had the operation at Great Ormond Street Hospital.
This July she turns 15. It is a milestone doctors said she would not see. “I want two parties in July, one for my birthday and one for the anniversary of my transplant,” giggles Hannah, who knows she isn’t out of the woods yet. She goes to school when she can but post-transplant drugs have weakened her immune system and Hannah has had three bouts of pneumonia in the past three weeks. Before that she had swine flu.
“We spend two to three days in hospital every week,” says Kirsty. “Hannah has a lot of back pain so it may be she has small fractures of her vertebrae which can be a side effect of some of the drugs. She may have growths on her kidneys, another side effect of the drugs.”
She also has an aneurysm from when doctors tried to do a biopsy but couldn’t get through because her arteries are so small. “It’s tough but as long as days in between are good for Hannah – and she tells me they are – that’s what counts.”
Hannah agrees. “I’m going to be more prone to infections but I’ll just have to take it as it comes,” she says with a maturity beyond her years. “It’s a small price to pay.”
She stands by her decision to initially turn down the transplant. “I made the right decision at the right time,” says Hannah. “I don’t regret it one bit. Unless you’ve lived my life a long time you don’t have any idea what I’ve gone through.”
Some people have told Kirsty she should have forced Hannah to have the transplant. She, however, believes every case should be treated individually.
“It certainly is different with transplants and chemotherapy,” says Kirsty. “Chemotherapy is so good these days they class it as a cure so you can have your child taken away from you and ordered to have chemo. A heart transplant is not considered a cure, so by law they can’t demand a child has one.
S HE ADDS: “The court case was more about keeping Hannah alive for the possibility of a transplant and putting her back on the drug that she’d decided she didn’t want.”
No one knows how many years the transplant will give Hannah, just that without it she wouldn’t be here celebrating the publication of her book Hannah’s Choice, which she and Kirsty wrote to explain what her life was like and to give hope to other parents and sick children. “I’ve got so much more energy that nothing stops me now,” says Hannah. “Watch out, world. I’m coming to get you.”
To order Hannah’s Choice (HarperCollins, £6.99) with free UK delivery, call 0871 988 8367 (10p/min from BT landlines) with your card details, send a cheque payable to Express Newspapers to: The Express Bookshop, PO Box 200, Falmouth TR11 4WJ or order via www.expressbookshop.co.uk
