Aged 10, Michelle became only the second person in NI to survive a heart transplant... 26 years later she's relishing life and says a baby would complete her
Londonderry woman Michelle Crawford had just six weeks to live when she was given a second chance at life. In a remarkable interview, she tells Leona O'Neill about the religious vision she had while seriously ill in hospital, her memories of the surgery she went through and why more people should sign the donor register
A Londonderry woman who was given a new heart at just 10 years old says she will be forever grateful to the family of her donor for the gift of life, and is encouraging others to sign up to the organ donor register.
Michelle Crawford’s parents were told their daughter had just six weeks to live at Christmastime in 1991. The family tried to celebrate what they thought was their last holiday together at their Waterside home after Michelle was diagnosed with a hereditary heart condition.
But six weeks later, on St Valentine’s Day, as her organs failed and she neared death, Michelle was given a new heart and a chance of life after becoming only the second person in Northern Ireland to survive such a transplant.
She is now 36, about to embark on a degree at Ulster University in health and wellbeing, loving life, in a long-term relationship with her partner Ross MacFarlane, and dreaming about having a family. She has come a long way from the sick little girl in Altnagelvin Hospital who wasn’t expected to survive.
“I was born sick, I was never really well as a child growing up,” she says.
“At the time, 26 years ago, the diagnostic tests were not very sophisticated. Up until I was about seven years old I was constantly going to the doctors. They had no idea what was still wrong with me. It was only when I was seven that my local GP actually discovered an irregular heartbeat. But again there were too many other symptoms and they didn’t know what was wrong. They took me into the hospital for more tests, but nothing could confirm why I was such a sick and poorly child. It was only when I was 10-years-old that they sent me to the Children’s Hospital in Belfast for more tests and we finally got a diagnosis.”
An extremely ill Michelle was diagnosed with the hereditary condition hypertrophic obstructive cardiomyopathy. Her organs had started to fail and cells in her heart were thickening, obstructing the flow of blood.
Doctors told her parents Lorraine and Noel that she had six weeks to live unless a heart donor was found.
“By the time they diagnosed me I was so far gone and so poorly,” she says.
“They said that the arteries were so narrow that they predicted I would only live for six weeks. I remember being very scared. It was a frightening experience. Although the main information was kept from me — as a child no-one would want to frighten you about the prospect of taking a heart from another person and putting it in you after taking yours out — I still had my own ideas about what was going on.
“I knew that my body was failing and I didn’t feel well. But at some sort of level, I think, when you’re not well you do reach a certain state of peace. As much as the whole hospital experience and needles and tests were frightening, and sensing your family’s fear was frightening, I had a real sense of peace.
“My poor parents, though... you could see that they were trying to be strong. My mum was just falling apart. I look back on old photographs, particularly of what was set to be our last Christmas as a family in 1991, and I could tell how worn down everyone was with worry.
“I was so sick. I actually had an out-of-body experience, like a near death experience in Altnagelvin Hospital, just before the operation.
“I was in severe heart failure. My grandfather was sleeping in the room with me on a hospital bed. I remember I couldn’t wake up and I had drifted off. I met someone, who I believe was Jesus. And He was coming for me. It was a wonderful setting. It was on a beach and it was night-time. Everything was black and the only light was the Moon. And Jesus arrived on his boat with his disciples.
“I remember the sense of longing, of wanting to go home and go with him. But we got to a certain point and he just stopped and told me that it wasn’t my time. He gave me instructions to go back. I was devastated, and I told him I wanted to go with him. And then I came around in the hospital and I was very distressed, I was crying. Apparently the doctors and nurses had been working on me and took ages to bring me back. I said to my grandad afterwards about who I had met and that he had told me it wasn’t my time. And my grandad said to me he knew I was going to be okay. He said it was the answer to our prayers.”
A few days later Michelle and her family were given the news that they had been waiting for, that a heart had become available and that her life could be saved. “I had been to Harefield Hospital near London for a transplant assessment, and even though I was very poorly and the chances of survival were not good, they said they would still try,” she recalls. “On Valentine’s Day we got the call to say that a heart was available and that it was a perfect match.
“When we got the call to say that there was a heart there, my mother was just inconsolable, she was crying and throwing up, and my father was trying to console her. It was the most frightening experience a child and a family could ever have. But back then, 26 years ago, I was only the second one in Northern Ireland to have been put forward for a heart transplant. So even the operation was scary.”
Michelle spent three months in hospital recovering from her operation and learning to walk again.
“Before I had the transplant I couldn’t play like other children,” she explains.
“I was basically wheelchair-bound. I had lost three stone, I couldn’t eat any more. My organs were failing. I was breathless, fatigued, tired and sick.
“After the transplant I was sedated for three days to give my body time to heal. But one week after the transplant the physiotherapists had me sitting up in the bed doing stretches. They were afraid I would have lost the ability to walk, because I was in the wheelchair prior to the op. Another week after the operation and I was standing up. I built up my muscles and I was able to walk again. I was in the hospital for three weeks, then moved to family accomodation in the grounds, and then home to Derry after three months.”
For years Michelle went back and forward to Harefield Hospital for tests to make sure her new heart was functioning properly and that her body was not rejecting it. She has been able to live a normal life and is constantly dreaming of the future.
She says: “I have a few limitations. I still would get a bit tired and breathless. It’s just because of the way the operation took place. But apart from that I have been able to experience all the things I could never do as a child, like riding a horse and a bicycle, and dancing, hiking, having friends and relationships.
“I would love to have children. My kidneys have been failing ever since I got the transplant, just because of the anti-rejection medication I’m on. The doctors have told me that there have been many transplant patients who have been able to have a family, but the strain on my kidneys might leave me on dialysis. It’s just one of those things that would have to be monitored. The most important thing I would want is a family. At the moment I’m putting it off, but it is something I would definitely want in the future.
“It’s something every woman wants to experience, the love of their own child. I think it would complete me.”
Michelle says she could never thank her donor’s family enough for the gift of life she has received and encourages others to sign up to give the “most sacred and selfless gift” anyone can give.
“I would say an absolute heartfelt thanks to my donor’s family,” she adds. “Because if it wasn’t for that little person who had passed away donating their organs I wouldn’t be here. You can never be grateful enough for someone giving you that extra chance to live. I’ve gone on and done great things with my life. I have never looked back. I’ve taken really good care of myself and every anniversary I try and do some fundraising for the hospital.
“I think everyone should sign up to become an organ donor. You don’t know the gift that you could give someone else. You could give them new life and a quality of life that they would never have got if it wasn’t for you. It is a very sacred and selfless gift that you can give.
“We always say: ‘Why take your organs to Heaven when Heaven knows we need them here’.
“From your death you could go on to give the most precious gift ever, which is life — and how amazing is that?”
For more information on becoming an organ donor, log on to www.organdonationni.info.