The current rules, written by national experts, do not offer adult lungs to children under 12 until all eligible older patients have turned them down. Sarah's family argued that this was unfair to younger children who might be sicker.
A federal judge agreed to temporarily suspend the under-12 rule for Sarah, 10, and Javier, 11. A hearing is set for Friday. National transplant leaders will meet Monday to discuss the rules.
There is no single waiting list. "Everyone thinks there's one list and it's a deli line," said Rick Hasz, a vice president of the Gift of Life Donor Program in Philadelphia.
Instead, new lists are generated each time a family donates a loved one's organs. Sarah, for example, has Type O blood, so she will be only on lists for lungs of a certain size from Type O donors. Larger adult lungs may need to be reduced for a child.
Within age categories, the organs are offered first to the sickest patients. If their doctors turn the lungs down, the organs are offered to patients farther down the list.
Only about 20 percent of donated lungs are healthy enough for transplant.
It's the age part of the wait-list system that is drawing fire. Donor lungs from babies through 11-year-olds are offered first to children in the same age range within 1,000 miles. Then they go to adolescents and adults.
Lungs from 12- to 17-year-olds are offered first to youths that age in the same region before being offered to children.
Lungs from adults are offered to everyone over 12 in the region regardless of illness severity, before going to children.
Sarah and Javier are now listed in two categories: 0 to 11, and over 12.
This presents a technical problem because severity of illness is calculated differently for children and adults. Experts say comparisons are not scientifically valid. As a result of the judge's ruling, however, the children have been assigned scores based on the adult system.
Sarah's would put her in the sickest adult category. Javier's is lower.
Sarah's family has asked the public for a "directed" donation, which is a way to bypass all of the rules. Once someone has died, a family can designate a specific recipient for the organs if everything matches.
The family said their doctors had rejected the idea of living donation, which is possible but high-risk.
Transplants of lungs are not as successful as those involving other organs. George Mallory, a pulmonologist who is medical director of the lung-transplant program at Texas Children's Hospital, said that half of lung-transplant patients were dead within five to seven years.
Sarah's mother, Janet, said that her family was aware of the risks, but that the girl was facing certain death.
"We're not looking for easy," she said. "We're looking for possible."
Contact Stacey Burling at 215-854-4944 or firstname.lastname@example.org.