Giving the gift of life is without doubt the greatest gift you can ever give. Transplanted heart receiver ALFRED DEBATTISTA, and the first unrelated kidney donor in Malta, JAMES MUSCAT, share their experiences with Therese Bonnici, as Parliament discusses the White Paper on organ donation, which proposes that the donor card is given legal status.

In 1999, Alfred was told that he was suffering from constant heart failure and that, unless he underwent a heart transplant, he had six months to live.

“I had a near death experience three times. I did see that flickering light at the end of the tunnel and I experienced such peace that, when I was saved, I was somewhat angry to be back,” the founder of the Transplant Support Group says with a smile.

Despite being told he had six months to live, he managed to hand on for another two years while waiting for a compatible heart to be donated. “When you’re waiting for an organ, each day you hope that this is finally THE day. I could never forget the day I received the good news from Dr Busuttil: I was way too excited to drive to hospital.”

Alfred had the transplant on the same day and, 16 years on, he is as alive as ever. “It is inevitable that, following the surgery, you want to know the identity of the person who saved your life. My donor, George Sultana, had not signed a donor card but his mother told the doctors that he had always expressed the wish to save lives, following his death. This is why we urge people who are interested in donating to make their wishes known to their family, because this prevents relatives from going through a needless ordeal at such a sensitive time.”

My donor’s mother feels her son’s heartbeat when she hugs me

Alfred (photo above) explains that the bond recipients have with their donors or their families is very strong. “They become part of your family. I still call my donor’s mother regularly, and would feel guilty if I didn’t. Every time she hugs me, she feels her son’s heartbeat just centimetres away. I can’t thank George personally for the live he’s given me, but the first thing I do when I wake up and before I go to sleep is pray for him.”

George’s mother is obviously still saddened by her son’s death but when she sees the number of lives he saved, it gives her a sense of peace since his death was not the end, but, rather, it was the beginning for several others. Seven people benefited from George’s donation, which included his heart, both kidneys, liver and both corneas.

Alfred admits that many people ask him if he has inherited any characteristics from his donor (in one reported incident, a ballerina had a sudden passion for kick-boxing after her transplant and later discovered that her donor was a professional kick-boxer) but says such incidents are not scientifically proven and may well be just coincidence.

‘My kidney function today is better than when I had two’ – kidney donor

James Muscat (photo above) was the first Maltese to donate his kidney to someone who was not a blood relation. Twelve years ago, he saw his brother-in-law, David, going through dialysis and decided he wanted to help him. Following approval from his family, he informed the consultant of his wish and the necessary tests were carried out. Despite not being related, his kidney was an almost perfect match for David and the transplant took place.

“Giving the gift of life is an extremely emotional experience. It is not just a gift for the patient but, even more so, for his loved ones,” James says.

Some people might be concerned that they would not be able to lead a normal life after donating a kidney, but the consultants will be sure to carry out all the necessary tests.

“Eleven years on, I lead a life that is more than normal. My kidney function today is better than when I had two kidneys and not just one. Of course, I do my best to lead a healthy life,” James says. “I not only feel better physically, but also psychologically. I don’t consider myself a hero; I did what I did out of a sense of duty and not sensationalism and now I am able to witness the results of my action.”

James had decided to keep a low-profile about his experience, before Alfred and other members of the support group persuaded him that he could help others by sharing his own experience. Today he supports potential living donors.

A kidney transplant is the most common type of organ transplant and a living donor can donate a kidney to relatives as well as to unrelated patients.  People usually donate one of their kidneys to a relative, but the number of living donors today has increased substantially, with some people choosing to donate a kidney to a complete stranger – termed a ‘Samaritan donor’.

Donor card to have legal status

At present, a donor card has no legal status and if the family of a potential donor objects, the organs are not donated. Usually, however, the relatives cooperate but there are instances when they object – and they are more sensitive when it comes to the eyes. The White Paper on organ donation proposes giving legal status to the donor card.

Ever since the support group was founded, its members have argued that relatives should honour the wishes of the deceased and that the donor card should not only serve as a token of reference but should also have legal status. At present, unless relatives have a valid reason for objecting, the organs of people with a donor card may be donated. However, the group believes that if the individual does not have a donor card but the family expresses the wish for organs to be donated, then these wishes should also be respected.

If a person changes his/her mind about being a donor and the relatives are informed of that decision, or if the donor converts to a religion that does not agree with organ donation, then those reasons will be considered sufficient to uphold an objection.

The Support Group proposes that when the new system is introduced, relatives should still be consulted to assure them that the dignity of their relative will be respected if organs are removed for donation.

The ‘opt-out’ system is already in place in other countries, meaning that unless someone officially opts out of donating organs, they are automatically perceived as a donor. This is done in order to match supply with demand. This, however, is not the model proposed in the white paper currently under discussion in the Maltese Parliament as the demand is much lower.

A living donor can choose to whom to donate a kidney, but the organ of a cadaveric donor will go to whoever needs it most, given compatibility.

People in need of a kidney transplant have the option of undergoing dialyses, which is used as an artificial replacement for the lost kidney function. Each year, the Lifecycle Challenge raises funds for the renal unit at Mater Dei Hospital. Over 200 people are currently on dialysis, but only about 80 of them are suitable for a transplant because other factors have to be considered.

When it comes to the heart’s function, then it is a completely different story. Only about one individual a year requires a heart transplant in Malta but, failing a transplant, that patient will most likely die.

The Transplant Support Group currently has 300 members, including people who have already received an organ and those who are awaiting one.

The White Paper proposes that living children as young as 12 will be able to make a donation of organs but the Support Group is proposing the age of 16. At present, a person aged 18 or over can donate a well-functioning organ.

The transplant support group is comprised of members who are donors and recipients of different organs, in order to specifically help potential donors and recipients and share their experiences with them. An ethics board ensures that there is no risk of coercion or undue pressure.

Currently, as the result of an EU directive, recipients are not permitted to know the identity of their donor, for fear of blackmail. But the reality is that – given the size of Malta – patients usually end up finding out who the donor was. Recipients of organs before this directive came into force still meet with relatives of their cadaveric donors each year and visit the grave of their donor.

Compatibility tests nearly 100 per cent accurate

In Malta, currently, the heart, kidney and eye cornea is transplanted. Other organs, such as the liver, are transported to the United Kingdom or Italy. In return, the UK allows Maltese patients to undergo liver transplants there, while Italy offers free compatibility tests for Malta.

The cornea is tissue, not an organ, because it does not rely on blood circulation. If a person dies in an accident, the only part of the body that can be transplanted are the corneas.

When an organ becomes available, a sample of the available organ is sent to a clinic in Rome – the closest to Malta – which provides the results of compatibility, tissue typing and blood grouping. At the same time, patients on the waiting list in Malta will be called in to undergo a similar test. Because the recipient is chosen on the basis of compatibility, the newest person on the waiting list can receive an organ before the others.

The test provides a nearly 100 per cent certainty that the organ is a good match. Repercussions from transplant surgery are rare and usually occur when the patient has an undiagnosed medical condition.

Doctors will always do their best to save a patient, even if he or she is a donor. A life support machine helps doctors in their efforts to save lives and slows down the deterioration process of the organs if the patient dies. Following death, a transplant has to be carried out within 24 hours.

The Support Group receives 2,000 new registrations a year, meaning that since its formation in the year 2000, a safe estimate of a total of 30,000 would be in order.

 

Frequently asked questions

 

What am I to do?

You may decide to donate a particular organ, or you may choose to offer any part of your body for transplantation.

 

Will the doctors try to save my life?

Most certainly. Your life comes first and foremost and every doctor’s duty is to preserve life until the very end. It is only when a person is finally certified as brain dead that the final process of the removal of organs can proceed.

 

Will I definitely be dead?

Without any doubt. To ensure this, two medical officers, in no way connected with the process of transplantation, will certify a death –separately and at different times – following separate tests that are carried out.

It is only when this certainty is established that the process of organ removal – following the consent of the next-of-kin – can commence.

 

Will my body be mistreated in any way?

Not at all. Specialised medical officers will operate on the body, exercising the utmost care and ensuring the dignity of the deceased. When the procedure has been completed, there will be no visible sign of organ removal.

 

What is the opinion of the Church?

The Roman Catholic Church encourages the donation of organs after death and considers this noble gesture as an act of love and a gift of life.

 

What do I need to do to become a donor?

Complete the form that is available online and also included in the brochure available from Mater Dei Hospital. Keep your donor card where it is readily available and inform your next-of-kin of your decision. It is of the utmost importance that your family is aware of your decision.

You can change your mind about being a donor at any time but, again, you should always inform your next-of-kin.