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Wednesday, Nov 25, 2009
One baby in every 660 in the United States is born with the extra chromosome that defines Down syndrome. Half of them have heart defects, and one-third of those will suffer complications (including death) if early surgery is not performed successfully. This makes children with Down syndrome the largest group of children with heart trouble.
When it comes to the point at which a transplant is necessary, one overriding issue drives all of the controversy over allocation: There simply aren't enough donor organs to go around. As a result, doctors must make daily decisions about who will get a transplant and who will not, who will be placed on a waiting list and who will not. Every "cut" from the list represents an almost certain death sentence, and for every person who is given a transplant, there's another candidate who is dying while waiting for the next appropriate match. Rationing is fierce, and more than half of those on waiting lists will die before getting a transplant. But why are people with Down syndrome categorically left off the list?
Says Dr. Rosemary Radley-Smith, medical director of Britain's Harefield Hospital, "My main aim is to make people live and to become independent human beings that will live a fulfilled life. I have grave doubts as to whether ... a Down's sufferer [would] ever be able to lead a totally independent life.
"If asked to make a decision between a normal person and a Down's patient, [we take] the person who is the most whole."
Others, such as Dr. Len Leshin, a Texas pediatrician specializing in Down syndrome, believe that colleagues like Radley-Smith are making unjust life-and-death decisions based on personal prejudices. Where does the line get drawn? How many of us would feel comfortable if transplant centers started requiring combined SAT scores of more than 1200 or denying transplants to people with other disabilities, like poor eyesight, dyslexia and club feet?
"Once you get into measuring quality of life, you are one step away from deciding between a doctor's and a janitor's lifestyle, or between a famous athlete and an obscure mother of two children," says Leshin.
Leshin isn't merely speculating. There have been several cases in which a celebrity has gotten preferential treatment, the most notorious being Hall of Famer Mickey Mantle, who received a liver transplant in 1995. Mantle was an acknowledged alcoholic and needed a new liver for alcoholic cirrhosis. He also had liver cancer, and died two months after his transplant. At the time, people raised quite a stink: Did Mantle get to jump the queue because of his celebrity status? And did he deserve to get a transplant, since his own behaviors and choices had brought on his condition?
There is also David Crosby, Rock and Roll Hall of Famer, who received a liver transplant in 1994 after his own liver was ruined from drug use. Four months after his diagnosis, transplant centers found not one but two organs for 53-year-old Crosby. Just before his first scheduled transplant, doctors discovered a tumor on the donor liver. Two days later, they found another suitable match.
Crosby himself stated, "I should have died a dozen times from overdoses and motorcycle wrecks." But this recklessness about life didn't stop doctors from determining that his was worth quickly saving. The average waiting time nationally for a new liver or heart is more than seven months.
The transplant community is divided on the issue of organs for alcoholics. The United Network for Organ Sharing, a nonprofit organization that maintains national transplant waiting lists in cooperation with the Health Resources and Services Administration of the U.S. Department of Health and Human Services, recommends that a patient have six months of sobriety before undergoing a transplant.
Some teams follow this advice, and some don't. But the fact remains that it is statistically more likely for an alcoholic, drug user, felony prisoner or person who has just attempted suicide to get a major organ transplant than a person with Down syndrome. This remains true even if the Down patient is married, holds a full-time job, attends college and has never touched a dangerous substance.
