Naomi’s story... how the battle she lost shows we can help with the gift of life

After their daughter’s battle with liver disease, one family tell Sarah Freeman why the push to increase the number of organ donors must continue.

When Phil and Patrice Lyth watch their youngest daughter Frances get married this weekend there will be someone very special missing from the wedding party.

Two weeks ago the couple’s eldest child, 26-year-old Naomi, died in hospital after a lifelong battle with liver disease. For much of that time, Naomi had viewed the condition as little more than an inconvenience, but when 18 months ago she was told her kidneys had also failed, she and the rest of the family had to face the stark reality.

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In December last year, Naomi told the Yorkshire Post how she hoped to become the first person in the UK to undergo a dual live transplant. Even then she knew time was running out and while she had already had to give up some of the things she loved most, she was also determined to raise awareness of the need for more people to sign up to the organ donor register.

In the New Year, Phil donated part of his liver to his daughter, but following complications after surgery Naomi was not well enough to undergo the second operation – Patrice had been going to donate one of her kidneys – and after years of defying medical predictions the family had to come to terms with the fact that this was one battle Naomi wasn’t going to win.

“Naomi had always been very honest about her condition and before she died she apologised to Frances for not being able to be there for her on her wedding day,” says Phil. “It was incredibly sad, but the caring daughter we knew was right there until the end and we know that she is in a far better place. When she was born we weren’t sure whether she would even survive and then we were told she would probably not live beyond the age of seven. But over a quarter of a century she used her body, with all its shortcomings, to its full potential and more. It’s not easy being with someone when they die, but it was a beautiful privilege to be with her when she shed her well-used, but worn-out body.”

A talented musician, painter and photographer, who despite her illness had graduated from the Cumbria Institute of the Arts with a 2:1 in Fine Art, Naomi ensured her funeral was a colourful affair. No-one wore black and the family were determined the ceremony, which took place in the ruins of St Mary’s Church above Pateley Bridge, was to be a celebration of their daughter’s life.

More than 200 came to pay their respects and the family are now determined to carry on Naomi’s work raising awareness of the need for organ donors.

“We know that often it’s not something people think about until they have some personal experience of kidney or liver disease,” says Phil. “I was the same. It wasn’t until Naomi was told that she needed a double transplant that I gave blood and got a donor card.

“It had always been something I meant to do, but for one reason or another I had never quite got round to it. No-one wants to think about not being here any more, but seeing what Naomi went through brought everything into sharp perspective. It was a privilege for me to be a live donor to my daughter and I think there is a need for us all to talk much more openly about what we want to happen with our organs when we die. Sadly things didn’t work out for Naomi, but organ transplantation is an amazing procedure and it has given so many people the chance of a new gift of life.”

The issue of organ donation and how to increase the number of people registering is one that has troubled successive governments and policymakers.

Some experts have suggested the introduction of financial incentives, from one-off cash payments to contributions towards funeral costs, but such a move raises a dozen ethical questions and has been dismissed by Patients Concern as simply “abhorrent”.

According to data collated by NHS Blood and Transplant (NHSBT), which runs regular awareness campaigns, the amount of people benefiting from donated organs is increasing, albeit slowly, year on year. The latest statistics show a record high of 3,470 transplants were carried out in the UK last year – the sixth consecutive year of increase.

Almost 675,000 people also signed up to the NHS Organ Donor Register, bringing the total to 17.5m, the equivalent of 29 per cent of the population. The numbers sound relatively impressive, but at the end of March this year 7,800 patients were on the transplant list and the average wait remains three years.

In Yorkshire, since April this year 272 transplants have been carried out, but in the same period seven people died before a suitable kidney or liver donation could be found. A further 866 are still waiting for the call which could very well change their lives and that’s with 1.5m people in the county already on the register.

“Despite the encouraging increase in the number of transplants taking place, the vital work of promoting organ donation must not stop as the need for organs is still greater than the number of donations,” says Sally Johnson, director of organ donation and transplantation at NHSBT. “Three people die every week while waiting for a transplant and not knowing when or if that call is going to come only adds to the stress and anxiety they are already feeling as a result of their illness.”

Naomi, who used to refer to herself as the most expensive patient in the village when living with her parents in Kirkby Malzeard, was treated in a succession of different hospitals from Great Ormond Street in London to Birmingham Children’s Hospital and latterly St James’s Hospital in Leeds.

With much of her life revolving around hospital appointments, blood tests and dialysis, she craved independence and while working for the Youth Hostel Association in Wales, she made a successful solo ascent of Snowdon. Even more recently, when her condition had deteriorated and she was on dialysis three times a week she still found time to volunteer for the Harrogate Homeless Project, Henshaws Society for Blind People and two years ago organised a fundraising walk in aid of the Children’s Liver Disease Foundation.

“Naomi wasn’t always an easy patient when she was younger,” says Phil. “There were several occasions when we had to chase her around hospital corridors negotiating with her through locked toilet doors, trying to persuade her to come out for blood tests. Her school days were not always happy because she felt different from everyone else, but she never gave up and never allowed her condition to hold her back. Naomi travelled to Australia and Denmark on her own and perhaps in retrospect she had an inkling that things would get more difficult later on.

“In her last six months we got to know Naomi even better than we already did and her courageous spirit and gutsy determination will always be with us. It may have only have been a short life, but it was a full one and she touched so many people with her modesty, blunt honesty and unconditional love.”

Most now recognise that the current system of organ donation does need to be overhauled. The Welsh Assembly mooted the idea of replacing the current opt-in register with an opt-out version, a move which also won the backing of Gordon Brown when he was Prime Minister.

Despite widespread support for such a scheme, the proposals never made it off the drawing board and the momentum for change slipped away. However, the need has not gone away. In fact the combination of an ageing population, medical breakthroughs and improved treatments now means more people are being put forward for transplants each year.

“Organ donation has almost been a victim of its own success and with more and more people eligible for transplants, the situation is only going to get worse,” says Phil. “In many ways we were lucky, as not all parents are a suitable transplant match for their child and while of course we would have done anything to help Naomi, in the long-term the whole way we approach organ donation needs to be looked at.”

Last year as Naomi and her family called on every MP to attend the first meeting of the Government’s All Party Parliamentary Group for Transplantation, there was just one thing she wanted for Christmas. “Having a transplant is not an option, it’s a necessity,” she said. “All I want is my life back.”

While Naomi’s wish wasn’t granted, her family now hope her story will inspire others to give the gift of life.

Join the organ donor register online at www.uktransplant.org.uk or call 0300 1232323.