For Audrey Eade, being pregnant was a bittersweet experience. Sweet, because she enjoyed the feeling of having the baby growing inside her; bitter, because of her conviction that there would be no happy ending, "no Carl, me and the baby" afterwards.
This was merely an acceptance of the facts. Audrey, then 33, had discovered her pregnancy while preparing for an operation to confirm the presence of cancer in her liver, a disease with a low chance of survival and requiring aggressive therapy that seemed to make a termination of the pregnancy inevitable.
Add to this the fact that Audrey has cystic fibrosis, the incurable lung disease. Aged 15, she overheard her mother telling another woman: "She will only live until she's about 30." "Until then, I thought that side of CF related to other people with the disease, that I was somehow different, that I had a mild version," she recalls.
Five years on, Audrey is the devoted mother of five-year-old Christian, able to do the ordinary things mums do: daily PlayStation stints after school, treats at Pizza Express, the visit to London to see the changing of the guard. She's negotiated term-time working at her Civil Service job and recently took 10 little boys bowling for Christian's fifth birthday party.
For this miracle of family life, Audrey has to thank ground-breaking surgery and committed healthcare practitioners, and above all to the strangers who enabled her to have a liver transplant when Christian was 14 months old and she was 35 – the age of the female donor at the time of her death.
National Transplant Week this month highlighted the continuing debate on how more people can be helped by this highly effective surgical procedure. Some propose that, instead of the current donor system, anyone who dies should be presumed to have agreed to donate their organs unless they have specifically said otherwise. More than 400 people died last year waiting for an organ transplant – a statistic that nearly included Emily Thackray, 24, whose life was saved when she was able to have a double lung transplant thanks to "one person's choice and one family's brave decision". Emily set up a campaigning charity, Live Life Then Give Life (www.livelifethengivelife.co.uk) supported, among others, by recipients of donor organs, including Audrey. The aim, says Thackray, "is to encourage people to think and talk about the subject of organ donation and to take the proactive step of signing the organ donor register".
For Audrey, the liver transplant in 2004 was the latest in a line of events that threatened to prevent her having a "normal" life. In her teens, she wondered briefly whether it was worth having grown-up goals – a career, falling in love. But she left school at 16 and worked full-time for Customs & Excise for 18 years. She still works a three-day week in a senior Civil Service position.
She married in her early twenties, and though the couple soon separated, she has no regrets. Then, aged 29 and with a chest infection serious enough to require intravenous antibiotics, she met Carl, who worked in the same office. "I had this terrible cough and he said jokingly, 'You're not long for this world.' I laughed and told him about the CF." She remembers him being "a bit apprehensive" but they decided to marry. "It's like we're living in parallel universes. Sometimes I'm obviously very ill but as long as I'm OK, we remain in a state of blissful denial."
She follows health professionals' advice and never searches the net for information on her ailments. The only time she ignored medical advice was after the routine scan that found potentially cancerous tumours on her liver, when hepatologists at Addenbrooke's Hospital in Cambridge told her she should be admitted for tests without delay. "We had a three-week holiday planned in South Africa. If this was going to be our last holiday together, we were going to enjoy it to the full. Although I was tired, we had a wonderful time."
Just before the tests were carried out on her return, she was asked for a urine sample to confirm that she wasn't pregnant. When the nurse told her she'd tested positive, she entirely understood her mixed response – the creeping physical pleasure, alongside the conviction that she wouldn't be able to keep the baby.
However, the timing of the pregnancy proved fortuitous. A new treatment for liver cancer, using an MRI-guided laser ablation that burnt away the tumours under local anaesthetic, had just begun tests. "There was no guarantee that it would work, or that the baby would survive. We didn't hesitate for a second."
Each session left her feeling battered and jaundiced, but the foetal heart monitor kept on showing that the baby hadn't been harmed and Audrey focused on keeping herself well. On the day of the birth, Audrey recalls the surprise on the anaesthetist's face when she came in to give her a "spinal". "I suppose I didn't look like someone who had cystic fibrosis and liver cancer. I was feeling great and so was the baby; he was perfectly formed at 6lb 6oz and had suffered no ill effects from the treatment."
She recalls being overcome with emotions: awe, pride, happiness – and guilt. "I still had cancer and this vulnerable infant might be left with no mum. It wasn't an option, I would just have to get better."
Chemotherapy started when Christian was three months old. Though successful, the cancer was still there – and when a donor liver became available, a "terrified" Audrey was admitted for surgery.
Two days later, she had a "strange daydream of a cartoon figure of a 36-year-old woman shaking her fist at me because I had her liver" – all the stranger when she found out the age and sex of the donor. "It did occur to me that, being so young, she might not have been a registered donor and that her family may have made the decision," she says. The likely explanation is that Audrey somehow absorbed the information about the donor from a conversation in theatre while she was under anaesthetic.
She vividly recalls giving thanks for the donation at the hospital chapel. "It is an overwhelming experience to have your life saved by someone who has just lost theirs," she says. "Yet I feel strongly that once you are dead, what does it matter what happens to your body? For so many people waiting for donated organs, it's either the last chance they have of life or something very close to that."
She continues to have an uncertain future and is "gently making Christian aware" of the reality of his mother's health. As a CF sufferer, Audrey knows that however healthy she feels, any infection can be fatal. When we speak, she was on two weeks' intravenous antibiotics to shift a chest infection. "You have to bite the bullet sometimes and recognise that you need something extra to shift the cold that's gone to your chest. I know when I've got that bad because I'm breathless and tired and look pale with dark circles under my eyes." The risk of taking antibiotics is that her body will develop resistance. She's just become allergic to one drug, a sign of resistance, though there are plenty of others to use.
There's also the risk of the cancer returning, although a CF consultant has predicted that she could live into her fifties. What makes everything bearable is the knowledge that, whatever happens, there is good support for Christian: "His dad, his grandparents, my brother, the godparents." She has kept a diary for her son "full of the fun things we do together, how much I adore him and some facts about life with CF". Meanwhile, normal life continues for the family. "For what it's worth," Audrey says, quoting her favourite Green Day song, "it was worth all the while."
The donation dilemma
Should everyone be considered an organ donor unless they opt out?
*Organ transplantation is simple, effective treatment that can restore health and quality of life for years, even decades. Yet more than 8,000 people are sick or dying from organ failure, and 400 people died last year waiting for a donor organ.
*Out of 120 MPs questioned, 97 said they were in favour of changes to the law so that everyone is automatically considered a donor unless there is evidence they had opted out. The poll was conducted in January this year.
*The All Party Parliamentary Kidney Group is committed to a change in the law by 2011 if transplantation rates do not increase significantly.
*Reports of forced organ donation, particularly in India and China, make an opt-out system unacceptable for many ethnic minorities.
*Surveys by Southampton University show that decisions by relatives who refuse to allow organ donation even though the dead relative holds a donor card are "considered, deeply felt and frequently not regretted".
*Whatever the law, intensive care and casualty teams are unlikely to risk jeopardising public confidence by insisting on an organ donation without the explicit prior consent of the patient or next of kin.
*The way forward is for families to talk about organ donation long before the need for choice arises, which will inevitably be at a time of all-consuming grief. This is the view of UK Transplant, which supervises co-ordination of transplants throughout the NHS ( www.uktransplant.org.uk).
Organ donor line
Sign up to the NHS Organ Donor Register on the UK Transplant website above, or by calling the NHS Organ Donor Line at 0845 60 60 400.Reuse content