I donated my son's organs - now two men live healthy lives

When Barry Shiel was a teenager, he was watching television with his mother when an organ donation ad came on. He expressed an interest in being a donor and his mother, Maureen, laughed and said he wouldn’t be needing to do that anytime soon.

In February 2011, at the age of 25, “fit, sporty and fun” Barry was killed in a car crash in Galway and Maureen remembered that teenage wish.

That memory led to her decision to allow Barry to become an organ donor when he died, giving the gift of life to two young men on the transplant list.

She describes the whole process at the time as a blur and “surreal”.

“You never want to bury a child, of course, and when I look back on that time, I can hardly remember anything at all. I do remember thinking that Barry was so big and strong and I thought he was going to survive. I didn’t think he would die.”

She's not sure if it was the Beaumont Hospital bereavement counsellor who mentioned organ donation but she felt it was what she had to do. "I am so pleased that I did consent to give the organs. It's a wonderful thing to do and I have got great consolation from it, knowing that part of Barry is out there and he has helped two other men live healthy lives."

Being able to get a letter from the donor recipients was particularly important to Maureen. It doesn’t make the loss any easier, she says, but “it helps to know that someone is suffering less because my son could be a donor”.

Some of Barry’s organs could not be donated because they were damaged in the crash but both his kidneys were suitable. Maureen is delighted that both donor recipients have been in touch with her to express their gratitude.

One man was the same age as one of her other sons and had a child the same age as one of her grandchildren. “They were lovely warm letters and they were so thankful for what we had done. One of the men had planted a tree in his garden in memory of his donor and thinks of him every day. That means so much to me.”

In the face of the loss of a family member, broaching the subject of organ donation can be an emotionally fraught business and Ireland is falling short.

With more than 600 patients awaiting transplantation in Ireland, one donor can potentially help nine other people but the system of organ donation is beset with problems.

Just so we are all clear on it, organ donation takes healthy organs and tissues (see panel below) from one person for transplantation into another.

There are three different ways to donate. After brain-stem death when the person has permanently lost consciousness and the capacity to breathe. This may happen even when a ventilator is keeping the person’s heart beating and oxygen is circulated through their blood. Circulatory death is the irreversible loss of function of the heart and lungs after a cardiac arrest from which the patient cannot or should not be resuscitated. With living donation, while still alive you can choose to donate a kidney, a small section of your liver, discarded bone from a hip or knee replacement and also your amniotic membrane (placenta) to a suitable donor.

Currently, anyone interested in becoming an organ donor can carry an organ-donor card. And this is where the problems start. Although you might consent to be a donor and have discussed those wishes with your family, if your family vetoes consent after your death, there is nothing to be done.

Opt-out system

Last year the Department of Health announced it was working on legislation to introduce an opt-out system for organ donation. However, the Government stressed any opt-out system would require family consent and agreement of the deceased person's next of kin which will still affect the donor rate.

It's a move being rejected elsewhere in Europe, including most recently in France where changes in law mean consent for organs to be removed is presumed unless the person joins an official "refusal register".

Until the 1st of January, when the legislation took effect, unless the person who had died had previously expressed a clear wish for or against donation, doctors were required to consult relatives who, in almost a third of cases, refused.

Irish Kidney Association chief executive Mark Murphy suggests the opt-out registry is the least of Ireland's problems. "We need to be sure that we are not misled about the benefits of the consent system moving from 'informed consent' [opt in] to 'presumed consent' [opt out] and whether it can help in increasing our current rate in organ donation. Ireland achieves 20 donors per million of population, compared with 30 donors per million of population in some other European countries.

“There’s a popular myth that the consent system matters, but it’s only a small part of the donor problem,” Murphy says.

Although there are very serious issues around consent or, more importantly, refusal to consent, Murphy believes the bigger problem for Ireland and its organ donor woes lies in the lack of a consistent approach, as well as equipment and manpower in the country’s intensive care units (ICUs).

‘Referrals’

The issue of “referrals” of donors fromICUs around the country is a mixed bag and our biggest problem, he suggests. “We’re trying to get an audit in place but while the vast majority are willing to consent, there are some who are resistant to an audit. There are differing approaches to procurement of donors and we would like to know why.”

He points to the fluctuations in organ donations from year to year as a major problem and would like to see a more consistent approach taken now that there are six trained organ donor co-ordinators in the three transplanting hospitals in Ireland – Beaumont (kidney), St Vincent’s University Hospital (liver, pancreas and kidney) and the Mater (heart and lung). Increasing the number of donors will also cut health spending on dialysis, Murphy says. Compared with the cost of dialysis, each kidney transplant saves more than €750,000 over the lifetime of the transplant.

To see excellence in organ donor success, we need to look to Spain, he suggests.

Spain has probably the best organ transplant system in the world. Its healthcare is highly regarded and is free at the point of delivery. But when it comes to transplants, Spain is way out in front. An impressive proportion of families say yes to organ donation at the moment of death.

The Spanish approach does not focus on donor cards, registers or “presumed consent”. Its main emphasis is on the teams of transplant co-ordinators in every hospital. This approach is what brings success, Murphy of the IKA believes.

“We cannot leave ICU policy on organ donation down to individual units. We need to make sure that there is a policy and unified approach to dealing with this tricky and difficult subject for families in ICU.”

It’s difficult not to accept that the main aim must be to increase the number of organs donated, especially when you talk to donor recipients.

Gratitude

The gratitude they feel, after getting a second chance at life, often after years of illness, should make us all sign up to the idea.

Dubliner Paul Prendergast celebrated 50 years of marriage to his wife, Rose, by renewing their wedding vows recently. This ceremony was even better than the first, he says, surrounded by their 13 children and 16 grandchildren. However, Paul would not have been alive to see the day without the kidney transplant he received 18 years ago. A fall at the time had revealed polycystic kidneys and he was on dialysis by the time he was 50. "It was no quality of life. I was in my 40s and had poor health and my children were small and I just could not function very well. Being on dialysis is very hard. You make the best of it but it's not really living well."

The recent wedding vow renewal was held in a hotel and Paul says it was great to have the whole family together. “The first reception was in Rose’s mammy’s house and we wouldn’t have been able to get as many in. Fifty years together is a long time and that would definitely not have happened if I had not received my kidney transplant. To be here and healthy and have all my children and grandchildren around me is a very special gift that I am grateful for every day.”

Organ donation

• The kidney: Kidney is the most common organ transplant performed worldwide. The renal patients, with failed kidneys, are the most fortunate group because there is an artificial way of keeping them alive – dialysis. But this is a tough regime of treatment. Since 1964, more than 4,000 kidney transplants have been carried out in Ireland.
• The heart: Heart transplantation started in the Mater hospital in Dublin in September 1985. The size, weight and condition of the heart are critical in this transplant operation.
• The lung: Lung transplantation is a lifesaving therapy for people with diseases such as cystic fibrosis, lung fibrosis and Alpha One. The programme in the Mater has grown rapidly since 2005 and is now one of Europe's leading lung transplant centres.
• The liver: The largest solid organ in the body, the liver, is transplanted at St Vincent's hospital in Dublin.
• The pancreas: The pancreas gland which, among other things, regulates the level of glucose in the blood, and is transplanted together with the kidney for insulin-dependent diabetic patients.
• Tissues: Unlike solid organs, tissue donors do not need to be maintained on life-support machines.
• The corneas: Corneal tissue is the front part of the tough outer shell of the eyeball. This transplant operation can restore perfect sight to the recipient.
• Bone and tendons: used for reconstruction after an injury or during joint replacement surgery. A bone transplant can prevent limb amputation in patients suffering from bone cancer.
• Heart valves: these are transplanted into babies and children with heart defects and into adults with diseased valves.
• Skin grafts – are used as protective dressings in patients with extensive skin loss. This may help to save the life of a person suffering from severe burns.
• Bone marrow – bone marrow transplantation (BMT) is a special therapy for patients with cancer or other diseases that affect the bone marrow. It involves taking cells normally found in the bone marrow (stem cells), filtering those cells and giving them back either to the patient or to another person. Source: Irish Kidney Association

The Irish Kidney Association's Organ Donor Awareness Week takes place from April 1st-8th this year. You can support organ donation by discussing your wishes with your family, carrying a donor card or download the donor app. Free text Donor to 50050 or visit www.ika.ie for more information.