Five-year-old Josh was seriously ill - until his father donated a kidney. Now he's a happy, healthy child. People can die while on waiting lists for organs, yet hospitals are not permitted to ask relatives to donate organs. Do we need to overhaul the system to save lives? Anne Dempsey reports.
Josh Moore (6) sits healthy and bright-eyed beside his Dad, Tom, nose buried in a tumbler of juice. "If you had seen him before the operation last year, he would have looked very different," says Tom. "Josh was very underweight, pale, had difficulty breathing as his lungs were pushed up, he had a huge tummy because the kidney was crowding everything out, and no appetite as he felt full all the time."
Last July, Tom successfully donated a kidney to his son, one of just seven transplants from a living relative in Ireland in the past 10 years. Raising donor awareness within hospitals and within families is an aim of the Irish Kidney Association, (IKA) during National Donor Awareness Week this week.
Josh was born prematurely and at three weeks was diagnosed with infantile polycystic kidney disease, which meant that his kidneys absorbed fluid instead of excreting it. He spent his first year in hospital, needed tube feeding and was on constant medication.
For his young parents, Mandy and Tom, it was a great shock. "Mandy was only 18, I was 21. It was a big cross to carry, we spent our life in the hospital," says Tom. At nine months, Josh had his right kidney removed to make physical room as other organs were being squashed by the swelling kidneys. At one year old, he came home.
"Josh was slow to walk and crawl, and was in and out of hospital all the time. He was always getting colds and flu, and was on 15 tablets a day. "They tasted yucky," says Josh.
"He's been very brave. He has coped with a lot of pain, prodded all over with needles. I remember one day he wasn't well, and we brought him in to Temple Street. They were trying to get a vein but the little veins were too thin and in the end they had to inject him in the head. Mandy and I were trying to hold him down, the room was hot, and I couldn't take it, I fainted."
Mandy and Tom separated when Josh was four and Josh now lives with his mother. But they remain devoted and co-operative parents. "We just live round the corner from each other, his mother and I get on very well and would do anything for Josh," says Tom.
As their child grew older, his condition deteriorated. "His tummy was so distended by the fluid, it was hard to get a pair of trousers over it. We were very worried. When I suggested a transplant the hospital took it up. The doctor said it had to come from me, that he couldn't have suggested it himself."
Early last summer, Tom underwent a series of tests in Beaumont Hospital which gave the green light for surgery in July. "Josh knew exactly what was happening. That morning we were sitting on the bed together and he said 'don't worry, Dad, it will be all right'. This was his ninth operation, so he was an old hand."
The procedure took four hours, and Tom woke in relief - and agony. "I was very sore," he remembers. "It was the worst pain I've every experienced in my life. I was home in four days, but walked round like John Wayne for another few weeks! I had to take three months off as there is a lot of lifting in my job. Today I'm fine, though I still get the odd twinge. You can function perfectly well on one normal kidney, but like any serious operation, you have to take care of your self. Going out and drinking 16 pints is not a good idea.
"Josh was isolated for infection control, and was very sick for two weeks after the transplant. After about three weeks, we saw a change, colour coming into his cheeks, he began to eat, to put on weight. He's only on four tablets now and doing well.
He used to be really hurt that he couldn't go out and play with his friends. To see him lying there would break your heart, but now he's running round, he's goes on sleepovers and it's just fabulous."
Josh says he can now play football, swim, go to school, see his friends and enjoy egg and sausage at his Nana's every Sunday morning. What does he think of his father's donation? "He's good," he says, smiling up at Dad who beams back.
"He is a very heart-warming boy, very loving. He knows I've given him a kidney, and he often thanks me and tells me he loves me. It's done a lot for me, and it's such a load off my mind. Thinking back over the last few years sends shivers up my spine. Basically all our lives were on hold, now we're able to get on.
"There must be many people like me who would do the same for their child, but we need more education about it. The people in Temple Street and Beaumont were terrific. I wondered they never asked me about being a donor, but I suppose they're afraid of putting on pressure or making you feel guilty. I think there should be some way of letting you know the choices, while allowing you make your own decision."
These days, advances in surgery mean that heart, kidney, liver, lung and pancreas can be used in transplants. Irish rates, however, show a small, dispiriting decrease. There were 126 kidneys transplanted in 2001, down three from 2000, 11 heart transplants last year, three less than 2000, and liver transplants were down from 40 in 2000 to 35 last year.
"We have 911 people on dialysis at the moment," says Mark Murphy, chief executive of the IKA, "an increase of 5 per cent in the last seven months. People die on waiting lists. With kidneys, there is more time because of dialysis, but a heart and liver transplant is not a list you want to be on."
He says that people could come out of list-limbo if more hospitals approached relatives after a fatality and asked about organ donation. There were only 71 organ donors in Ireland both last year and the year before, representing a small proportion of fatalities through road traffic accidents, brain haemorrhage, falls, sport injuries, murders and muggings.
However, our retrieval situation is patchy. "Due to the pressure on intensive care units and accident and emergency departments, we would be fairly certain that all possibilities are not being followed up. In 2001, the main trauma centres at Beaumont Hospital, Dublin, and Cork University Hospital were responsible for 31 of the 71, but this would not reflect the numbers of potential situations where organs could be saved.
"Families who have dealt with smaller hospitals tell us they often ask if the organs can be saved but the machine has been switched off, which can be very upsetting, particularly if they wished to donate. We also lose organs where a hospital is unable to release the operating theatre to a transplant team, or the theatre is on down time. Speed is of the essence. A kidney can last 24 hours, the heart 18 hours.
"In America, it is a required request. If someone is on life support, ICU staff are statutorily obliged to ask. Here, people don't do it, they can't hack it, they don't have the bottle to do it because they feel families will be upset."
Dr John Donohoe, consultant nephrologist at Beaumont Hospital, acknowledges that more needs to be done to overcome staff reluctance. "If you've been caring for a patient, and getting to know the family, it is not easy afterwards to ask about donation. A trained outsider would not have this problem, though we also know it can help families if they donate. Also, if the person has been carrying an organ donor card, it makes our job much easier."
While there are thousands of donor cards in circulation, a MRBI survey for the IKA last month indicated that 64 per cent of the public have made no decision about organ donation. Mark Murphy accepts that a lot of public education is still needed.
Last Wednesday, Micheál Martin, the Minister for Health and Children, announced the setting up of a representative working group to examine the whole area of organ retrieval and procurement. Murphy welcomes this initiative. He would like to see a trained organ procurement officer appointed to every health board, to work with hospitals and to offer counselling and support to families.
He would also like to see a reintroduction of the programme for transplants from a living relative. "It was traditionally done here until 12 years ago then we lost a donor. Someone died during the operation, and everyone ran for cover. Now I believe many consultants would agree that it's time we began again. It's a known fact that the living related organ will have a longer expected useful life than [one from\] a cadaver.
"Most European countries' programmes include a 25-30 per cent living-related transplantation, and in America the figure is hitting 40 per cent. Here it's 1 per cent. It is costing €36 million to keep people on dialysis. A relatively small investment into extra facilities would prove a lot more cost effective than dialysis treatment, never mind the enormous improvement in quality of life for such patients."
During Donor Awareness Week this week , the IKA will be fund-raising through its sale of forget-me-not paper flowers.
If you would like a donor card and fact file contact the IKA, U43A Park West, Dublin 12. Tel: 01-6689788. If you have a donor organ card, it is important to sign it, carry with you, and inform your family of your wishes