Durban - I signed up to be an organ donor the day I met 17-year-old Matthew Legemaate.
The most ignorant questions came to mind as I completed the online forms. Will I mind being cut up when I’m dead? What will my body look like to my family who will perform the Hindu rituals before my funeral? Could I offer my heart, but not my eyes?
For most people talking about death is morbid… that’s probably why someone like Matthew can be on an organ transplantation waiting list for 17 years without any luck.
Recognising what a selfless act it is to give life doesn’t seem to be enough to draw commitments from the more than 50 million South Africans of whom only 160 000 or so are registered donors.
Submitting your name is imperative.
Can you imagine approaching someone in hospital, who has just lost a loved one, to ask if you can harvest their organs before they’re off the machines?
Without that crucial consent from the donor and family who are aware of that person’s choice – it’s almost always too late.
“The worst,” says Samantha Nicholls, executive director at the Organ Donor Foundation, “is when someone calls to convey the wish of a deceased family member, whose body is in the morgue”.
By then it’s too late.
“It is essential that organs and tissue are removed as soon as possible after brain death to ensure successful transplantation,” says Dominique Stott, executive: medical standards and services at the Professional Provident Society.
“A viable solid organ donor (ie liver, pancreas, lungs and heart) is a person who has been declared brain stem dead. The majority of these donors are often trauma patients from tragic accidents or those who have been terminally ill.”
There are about 4 500 adults and children in public and private health care on the national list for solid organs and tissues.
Former school principal and mom, Janet Legemaate, doesn’t know where her son is on the list.
Matthew was born with a congenital heart defect called tetralogy of fallots and pulmonary artesia.
Factors such as his blood type and chest size all play a role in him finding those lifesaving organs.
The young boy, who underwent the first of five open heart surgeries when he was 36 hours old, has simple aspirations: to go cycling, swim and play golf. All those things that require the strong lungs he does not have.
Matthew says he is always tired and doesn’t sleep very well. He is prone to infection.
He carries around portable oxygen when he isn’t at home and on a larger oxygen concentrator. It runs on electricity and so the family who have phenomenally high medical bills, had to recently buy a generator.
The family are positive, jovial people who say their son’s illness has brought them closer together.
Matthew is clearly bright and works hard at school despite less oxygen to his brain. He has hopes of one day becoming an engineer or graphic designer.
Janet says for her son’s 17th birthday in January, she posted a request on Facebook for someone to take him in a sports car which he’s always wanted to do.
“We were inundated and it made me realise the power of social media. We’ve since put it to better use and began advocating for organ donation.”
She says she also chatted to her son about the idea of someone “passing on” in order for him to live and says this is another aspect of a complex situation. “He had to come to terms with it, because if the call comes he has to make a decision in seconds.
“Matthew also knows that receiving organs is only the beginning of more invasive procedures and treatments to ensure his body accepts the new organs,” says his mom.
The thought of Matthew, full of promise, waiting for organs in a country with such a high fatality rate, makes me angry and so I signed up.
Admittedly, as I do, doubt arises. Stott says two independent doctors must certify the donor brain dead before the procedure begins.
“The utmost respect and dignity is given to the donor at all times. The recovery of organs and tissue are carried out with great care by surgeons and trained staff and the process does not change the way the body looks. A prosthetic may be put in the place of the organ that was removed. As a donor you can elect which organs you want to donate and which you don’t.”
This matters to me as in my culture we often have open caskets at funerals.
“The funeral is not delayed either and there is no cost or pay on either end of the process. Your organs are your gift to give.
“You can register online in a matter of minutes. There are no medical tests.”
Stott says those who sign up must convey their wishes to their family because in South Africa the family has the ultimate say.
“Without their consent, your organs or tissues cannot be donated. You can change your mind at any time. Registering just ensures that when the time comes your family is open to the idea.”
Nicholls adds: “Your heart, liver and pancreas can save three lives and your kidneys and lungs can help up to four people. You can save seven lives.”
The Mercury
* August is Organ Donor Month. Visit the Organ Donor Foundation website at www.odf.org.za or call toll free, 0800 22 66 11, to register.