Sarah Murnaghan, center, marks the 100th day of her stay in Children's… (Murnaghan family )
A 10-year-old Pennsylvania girl has been given a chance at a transplant that could save her life after a judge ordered that the desperately ill child be added to the list of those hoping to receive an adult lung.
The case, involving Sarah Murnaghan, pits the fate of a sick child against a series of federal rules that define how donated lungs will be allocated. Children younger than 12 are on a separate list for pediatric lungs where donated organs are much rarer.
Federal officials, including Health and Human Services Secretary Kathleen Sebelius, have insisted they do not have the authority to bypass the existing protocols -- despite pleas from the family and some congressmen.
U.S. District Judge Michael Baylson took the government off the hook on Wednesday by issuing a temporary restraining order in the case. Baylson suspended the age limit in the nation's transplant rules for 10 days for Sarah, who has end-stage cystic fibrosis and has been waiting three months for a transplant at Children's Hospital of Philadelphia.
A June 14 hearing has been scheduled on the family’s request for a broader injunction.
The ruling requires Sebelius to order that Sarah be placed on the adult list as well as remaining on the priority list for a lung from a child donor.
The Organ Procurement and Transplantation Network added her to the list Wednesday night after the government relayed Baylson's ruling, Sebelius said in a letter emailed to reporters on Thursday.
“For us, this means that for the next 10 days, Sarah's placement in the queue for adult lungs will be based on the severity of her illness, and she will not be penalized for her age,” the family said in a prepared statement after the court ruling.
“We are experiencing many emotions: relief, happiness, gratitude and, for the first time in months: hope,” they said.
There are reasons to separate children from adults on transplant lists -- such as the size of the lungs needed -- but the most basic rationale revolves around questions of availability. About 1,700 people are on the waiting list for a lung transplant, including 31 children under age 11, according to the organ transplant network. In his ruling, Baylson noted that adult lungs were “more than 50 times greater than the pool of lungs donated from children under 12.”
In their suit, the Murnaghans -- who live in Newtown Square near Philadelphia -- challenged the current rules, calling them arbitrary and capricious. Because pediatric lungs are so rarely donated, children are effectively the subject of discrimination and medical need should be the basis, the family argued.
Sebelius has also called for a review of pediatric transplant policies but the Murnaghans said Sarah was too ill to wait.
Despite the ruling, Sarah is not guaranteed new lungs, just a chance at getting them.
Still ahead is the usual problem of finding organs suitable for transplant based on condition, size, blood matching and similar medical factors.
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