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Wednesday, Nov 25, 2009
Doctors routinely deny heart transplants to the mentally retarded.
Dec 8, 2000 | When the U.S. Supreme Court intervened recently in the case of Johnny Paul Penry, a condemned killer said to have the intellect of a 7-year-old, it looked for all the world like the issue of whether it is legal to execute the mentally retarded might finally get a fair hearing.
But no.
The court's move merely indicates that criminals with low I.Q.s may be spared the death penalty. Innocent people with low I.Q.s, in particular those who have Down syndrome, may still be sentenced to death on a regular basis -- in this country and around the world.
Fifty percent of the estimated 250,000 people in the United States with Down syndrome suffer from heart defects, the most common being an atrioventricular canal defect, which means that their hearts and lungs must work harder to compensate for a hole in the septum in the "four corners spot" where the atria and ventricles meet.
If detected early, this defect can often be corrected with surgery. However, the diagnosis may be overlooked if early symptoms of heart trouble (lack of energy, poor weight gain, etc.) are mistakenly attributed to Down syndrome itself. Also, the improvement in diagnostic tools is still fairly recent (within the past 25 years), so older people with Down syndrome have frequently missed out on early corrective surgery.
The only hope for those with this defect in its late stage is a heart transplant. Yet that hope has been extended only once in the history of the operation to a person with Down syndrome -- and that occurred only after she and a group of supporters gained extensive media attention and spoke directly to then President George Bush.
People with Down syndrome are effectively barred from the possibility of a lifesaving transplant -- unofficially in this country, officially in places like Great Britain. The reasons vary depending on which surgeon you ask. The response of those condemned to die is uniformly miserable.
Doctors who eliminate patients with Down syndrome from eligibility for transplant often suggest that such patients wouldn't be able to keep up with the strict postoperative regimens. This is not a trivial excuse; noncompliance with postoperative care is the third leading cause of transplant failure. Patients must be certain to take their medications on time, report symptoms, make follow-up appointments for checkups and so on.
But to use this as the primary reason for denying people with Down syndrome from consideration for a transplant ignores two facts: First, most people with Down syndrome have parents or caretakers who can help. Second, nonhandicapped infants and children are often given heart transplants, and certainly they're not expected to be responsible for their own aftercare, just as they are not expected to know how to change their own diapers.
Some doctors offer a less politically correct, but probably more honest, answer: People with Down syndrome are not considered as valuable to society.
One of those less than valuable society members is my 21-year-old brother, Paul. Fortunately, he is one of the lucky 50 percent of people with Down syndrome who were not born with a heart defect. That means, more than likely, he will never have to sit in front of a cardiologist and be told that he's too stupid to live.
Of course, he'd be smart enough to understand that the doctors were telling him he was not worth saving. And since he works in the dining hall at a hospital, he just might deliver breakfast to the former cocaine addict who was scheduled to receive the heart that could have saved Paul's life.
