HHS Secretary Sebelius Calls for Review of Child Organ Transplant Rules

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"OPTN cannot create a policy exemption on behalf of an individual patient, since giving an advantage to one patient may unduly disadvantage others," the statement read.

Doshi said he thinks children under 12 years old should be considered with the adult patients and awarded organs based on how severe their conditions are. Adult lungs may not perfectly fit child patients, but they can be used to save multiple children. One of his 6-year-old patients' got a partial lung donation from her mother several years ago in a last ditch effort to save her life.

Although adults make up the majority of the lung transplant waiting list, NYU Langone Medical Center's head bioethicist Art Caplan said children should be given priority if they're sicker than those adults, in part because children should be able to get more healthy years out of the lungs than adults.

"At the end of the day it's not so simple as kids versus adults," Caplan said, adding that chances of survival with the new organ and many other issues factor into the decision. "I think, however, there is a case that would say ... most Americans -- as donors -- would want to give priority to children." Doshi also said he thought that most adults would agree children should come first.

Sarah, who dreams of being a singer and a veterinarian, told her parents she wanted to fight for her life but not know how dire her situation was. However, Ruddock said she probably knows anyway. She lost her hearing a few weeks ago as a side effect of one of the antibiotics keeping her alive. At bedtime, she now asks her parents if she'll wake up.

Last Monday, Sarah's siblings and cousins gathered to say goodbye even though their parents didn't say that's what was going on, Ruddock said. On Friday, doctors told the family that they weren't sure Sarah would survive Memorial Day Weekend, but she pulled through.

"She was the little leader in our family. She would always get the little kids to put on a play for us," Ruddock said. "She's a bit of a pistol with a good personality to survive. She's not meek. She's a tough kid."

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