IN Devon last year, five people died waiting for an organ transplant and local people are urging others to talk about organ donation.

Ex-Kingsbridge School pupil Chris Bryon-Edmond is an advocate for organ donation after his daughter Lottie received a life-saving liver transplant at just weeks old.

‘After a perfect pregnancy, my wife was rushed to hospital seven weeks from her due date and Lottie was born via an emergency C-section’, explained Chris, ‘we went to a couple of hospitals and eventually Birmingham Children’s Hospital diagnosed a rare liver condition.

‘We were told she had just two weeks to live and she would need a liver transplant to survive. The average wait time is two and a half months for a transplant, so her chances were rubbish. Even if a liver was found for her, a transplant had never been performed on someone her size, she was only 4.1lbs, so she was unlikely to survive the operation.

‘Some people wait years on the transplant list and for those two weeks we were watching our child dying. It was a really horrible and evil time. Then it was announced to us that we had won the lottery and a liver was available.’

Lottie received a ‘domino transplant’ - where a person receives a liver transplant from a donor, but their liver is able to be used in another patient without passing on the problem - as the liver can regenerate and can be made smaller to fit in a child’s body.

‘We could have passed on that liver as it wasn’t perfect, but Lottie was already on borrowed time, living a day longer than the doctors had said already. When the doctors saw her liver they wondered how she was still alive as it was so damaged, we’re extremely lucky.

‘Without that transplant we wouldn’t have a daughter, she wouldn’t have lived another 24 hours without it. Now she’s a happy five-year-old and you would never know anything was ever wrong with her.’

Chris said the transplant community was a small circle and they were members of closed groups on social media where he and his family ‘know a lot of people who haven’t won the lottery’, and now do a lot of campaigning to encourage people to talk about organ donation.

He continued: ‘When you’re in that situation, you see how extraordinary the NHS is, how extraordinary the doctors and nurses and medical science is, but they couldn’t fix our daughter without a transplant.

‘Everyone needs to be on the organ donor register so we can look after everyone, and we need to talk about it.

‘That moment when someone is dying or has died is the wrong time for doctors to be asking for organ donation, we need to have the conversations first.’

Chris said that people sign up to be an organ donor, but doctors are not going to go against family wishes at that awful time, so 43 per cent of people on the donor register DO NOT donate their organs when they can, because of family intervention.

‘The key is to talk about it’, said Chris, ‘Your more likely to be able to donate your organs if you have told your family you want to, but aren’t on the register, than if you’re on the register but your family don’t know your wishes.’

David Potez, from Loddiswell, also received a life-saving organ transplant recently when he received a new kidney. ‘I am extremely grateful to whoever the donor was and to the transplant team’, David said.

‘You don’t get much information about the donor, I only know that she was a 64-year-old woman who had died from a bleed on the brain, that she was in good health and was an ex-smoker years ago.

‘I was on dialysis for fourteen or fifteen months and I was on the transplant list for two-and-a-half years. You are told that the call will usually come in the middle of the night and mine did, at 4.10am. I burst into tears and friends took me in to Derriford Hospital, I had to be there by 6am.

‘You have nothing to lose by being an organ donor and I think its selfish not to do it. There is a shortage of organs. We are better protected now with safer cars etc, and there are less accidents which is when most of the healthiest organs can be donated. Join the register.’

110 people in Devon are currently waiting for an organ donation, with 59 people receiving transplants in the county last year. It was too late for five people who died in Devon last year waiting on the transplant list.

NHS Blood and Transplant is drawing attention to the situation in Devon during Organ Donation Week, September 5-11. This year’s theme is ’Turn an end, into a beginning’, emphasising how each of us could give someone the chance of a new beginning by telling our families we want to be an organ donor.

Organ donation is a relatively rare event in the UK, because although around half a million people die each year, only around 1 per cent do so in circumstances which allow organs to be donated. As the families of potential donors are approached by specialist nurses and asked to support their relative’s decision to be an organ donor, it’s hugely important that families know what their relative would have wanted to happen.

Sally Johnson, Director of Organ Donation and Transplantation at NHS Blood and Transplant said:

‘We’re very grateful to every family in Devon who supported a relative’s decision to donate or who made the decision to donate on behalf of their relative last year. Quite simply, without them being willing to support donation, more than 3,500 transplants couldn’t have taken place in the UK.

‘Many families in Devon tell us they take huge comfort in knowing that their relative has saved the lives of others.

‘We recognise that families are approached about organ donation at a difficult time, but with almost all of us prepared to take an organ if we need one, we need to be ready to donate too. Think about what we would want others to do for us if we ever need a transplant and be prepared to donate.

‘Talking to your relatives about what you want is crucial as it is much more difficult to agree to donation when you don’t know what the patient would have wanted. There are 110 people in Devon waiting for a transplant now and they need people to agree to donate for them to get the organ transplant they so desperately need.

‘It is especially important for people from our Black and Asian communities to talk about organ donation. I realise that this is a very difficult subject but there are many Black and Asian people who need a transplant. While some are able to receive an organ from a white donor, others will die if there is no donor from their own community.’

If you would like to help others after your death tell your family your want to be an organ donor and join the NHS Organ Donor Register by visiting: www.organdonation.nhs.uk or call 0300 123 2323.