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Disabled Baby Turned Down for Heart Transplant

Monday, December 2nd, 2013

A 5-month-old baby named Maverick who was born with a rare genetic defect in addition to severe heart problems does not qualify for a potentially life-saving heart transplant because of the genetic condition, doctors have told parents Autumn Chenkus and Charlie Higgs. The story, which is now the subject of a federal investigation because the parents are accusing doctors of withholding the heart unfairly because of fears Maverick could have severe disabilities later in life, highlights the debate within the medical community over how organ transplant decisions should be made. CNN.com has more on Maverick’s story:

Maverick was born with a severe heart defect, and even after two surgeries was in heart failure. Doctors had discussed a heart transplant with Maverick’s parents, but at the meeting they said he didn’t qualify for a new heart because he had a rare genetic defect that put him at a high risk for tumors and infections. A heart transplant would be too risky, they explained.

As Chenkus did her research on Maverick’s genetic condition, she couldn’t believe her eyes. Not one of the studies she read mentioned anything about an increased risk for tumors or infections. She e-mailed one study’s author, and he confirmed she was right.

Now they’ll do the transplant for sure, she told Maverick’s father excitedly. Our son doesn’t have to go home and die.

But it didn’t matter. The doctors still refused to give Maverick a new heart.

At first, Maverick’s mother was confused, but then she said it dawned on her: This supposed propensity for infections and tumors was a smokescreen.

She felt the real reason the doctors were denying their baby a life-saving transplant was that children with Maverick’s genetic condition grow up to have disabilities. They don’t want to give Maverick a heart because he won’t grow up to be “normal,” she thought.

At another meeting, she looked one of the doctors in the eye.

“You’re discriminating,” she said.

“That’s ridiculous,” she remembers the doctor responding.

“You don’t want to waste a heart on him,” Chenkus replied. “You’re trying to play God, and you’re lying to me.”

What happened next is the subject of a federal investigation and has pitted a family against the very doctors who were supposed to save their baby’s life.

There are few hard and fast rules to guide doctors as they select who will get a transplant, effectively selecting who will live and who will die.

And there’s no question some will die. Last year in the United States, 321 people, including 19 infants, lost their lives while waiting for a new heart. Right now, some 3,500 people await a heart transplant, and the situation is only getting more desperate as the waiting list grows but the number of donors remains about the same.

In the face of such scarcity, doctors try to select the patients most likely to get the longest life, and the highest quality of life, from a new heart.

“We have to be stewards of a very valuable resource. We want hearts to go to people who we think will benefit the most from them,” said Dr. David Taylor, immediate past president of the International Society for Heart and Lung Transplantation.

These decisions are, to some extent, subjective, as doctors sometimes disagree with each other about who should get an organ. Over the years, medical ethicists and patient advocates have accused transplant physicians of discriminating against one group in particular: the disabled.

“We absolutely know this happens. It’s a huge problem,” said David Magnus, director of the Center for Biomedical Ethics at Stanford University. “It’s real people sitting in a room making these tough decisions, and it’s not surprising their own prejudices and biases influence them.”

 

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