The Darker Side of Organ Donation


Fort Lauderdale, Florida -- The neurologist's words were so shocking, I simply couldn't comprehend them.

"Your sister is brain dead."

Before the news could sink in, he tossed out something else, nearly as stunning.

"I feel obligated to point out that she would be an excellent candidate for organ donation."

So began the most devastating and confusing day of my life. Within 12 hours, I would call the family members back home to Vicksburg, Mississippi, to mourn the loss of our brightest star, Jennie Katherine Johnson, killed in a car accident. I would inform my mother, critically injured in the same accident, that her only daughter was dead.

And I would give permission for an organ-procurement team to take the heart, liver, kidneys and corneas out of my 18-year-old sister's body before unplugging her from a ventilator.

It was April 13, 1986. I was 25.

The furious legal and ethical debate in the past week over Baby Theresa forced me, unwillingly, to face memories I wanted to leave buried with my little sister. Finally, a six-year standoff with my feelings has ended. For the first time, I can admit to a lot of bitterness, not just at Jennie's death, but also at the process that converted her so swiftly and almost casually from lovable college freshman and aspiring artist into a human organ farm.

I'm talking about the darker side of organ donation. It's much more complicated than any news story can convey.

I still don't remember who put the idea in my head that organ donation was one of the few ways to make some sense out of a senseless horror. I just know that somewhere in the middle of the craziness, I latched onto that concept. I had another recurring thought: Maybe Jennie wouldn't be as dead if part of her lived on in someone else's body.

I saw that same one-two thought process echoed during the Baby Theresa ordeal. The child's family and doctors said it. Lawyers pleaded it. A court case and legislation were built on it. But I can tell you it's faulty thinking. The fact that a loved one's heart keeps beating in another person's chest doesn't lessen the blow you feel from the loss. And nothing can ever explain untimely death, whether it comes to an 18-year-old or an infant.

Yet the experts in the field of organ donation and transplantation will let you fix on those two concepts -- making sense of tragedy and creating a living memorial to lost loved ones -- in order to win your support for organ donation.

For a long time after my sister's death, I had nightmares about allowing the mutilation of her body. I even began to have doubts about the doctors' claims that she had been brain-dead, and that she could feel no pain while they took away her vital organs. These reactions hit me like aftershocks for years.

Beyond such irrational fears, there also is a cold reality most donor families must face:

Once this act of human kindness is completed, so is your usefulness in the transplant world. Except for the collection of reusable body parts, the whole of transplant science is geared toward organ recipients. Their right to privacy overrules a donor family's right to know who received the organs. Any communication between recipient and donor family has to be initiated by the recipient. In our case, there apparently have been no attempts by any of the six people who got my sister's organs to contact our family.

Six months after the accident, my mother made a quixotic journey from Mississippi to Richmond, Virginia, in hopes of locating the recipient. She found the hospital where a young man had received my sister's heart, but never made it past staff members who refused to give any information for fear that it might upset the recipient's family. They made it clear they thought her mission was more than a little morbid.

After recovering from her injuries, my mother went back to college to become a social worker, determined in another way to make good out of bad. One of her pet projects now is to establish a support network in Mississippi for organ donors' families. She has made me swear that when her time comes to join my sister, I will not allow anyone to take her organs. I won't.

For my part, I carry a driver license that lists me as an organ donor. They can have my whole body if they want it. But when I'm gone, I don't want anyone standing around trying to explain how death got cheated a little on the day they took a piece of my flesh and planted it in someone else.

I want experts to take the time to explain all the negative sides of organ donation to the people I love. Then I want those loved ones to say goodbye and get on with their lives.

It's time I did the same.

Hayes Johnson is an assistant city editor of the Fort Lauderdale Sun-Sentinel.

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