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Case of girl who fought for adult lung transplant leads to policy change

Photo provided by the Murnaghan Family
Tuesday, June 24, 2014 - 9:00am

A year ago, Sarah Murnaghan, an 11-year-old Pennsylvania girl, was fighting for her life while her family waged a campaign to change a national policy on lung transplants for child recipients.

Their battle has now led to permanent policy change.

On Monday, the Organ Procurement and Transplant Network (OPTN) and United Network for Organ Sharing (UNOS) announced their decision to allow some children ages 11 or younger to receive additional priority for lung transplants, including lungs from older donors, according to a statement from UNOS.

The previous policy required lung transplant candidates to be at least 12 to receive lungs from an adult donor. Following an appeal by the Murnaghans, in June 2013 a federal judge issued a restraining order to prevent the age-restriction policy from being imposed in Sarah's case.

Sarah received lungs donated by an adult. The first transplants didn't take, requiring a second transplant, again from an adult donor.

"Sarah receiving adult lungs means she is now breathing on her own," her family said last year, "after three years of being tethered to machines."

On Monday, the family called her new lungs "beautiful" and said Sarah will be returning to school in the fall.

"Sarah is still getting physical rehabilitation and we have work in front of us," said the family, "but we are blessed there has been no rejection."

The new policy change to allow some child recipients to receive lungs from adult donors "is meant to provide an appropriate balance for a specific group of candidates," a UNOS statement said Monday.

The Murnaghan family expressed excitement regarding the decision, saying in a statement also released Monday that the policy change "is important for two reasons: More children will be fortunate enough to receive life-saving lung transplants, and the medical community has determined this is the right step to take."

The fight was not just about Sarah, the Murnaghans said, "because there was a very good chance it would have been too late for her -- but for every family in our situation."

Several factors determine a potential child recipient's place in line on the adult list, such as distance from donor to potential recipient, a lung allocation score determined by a patient's diagnosis and test results, and a patient's blood type.

Sarah's parents said her score was a 78 last year and went up to a 91 in June of 2013 according to a family spokeswoman. Anything above 60 is considered a high score, according to the OPTN's ranking system, and means a transplant need is particularly urgent.

Sarah's parents fought to change the policy regarding lung transplants because their daughter suffered from a lifelong battle with cystic fibrosis. This illness led to a deterioration of her lungs.

In light of Sarah's case the OPTN executive committee a year ago approved a one-year change to the age-restriction policy.

Today, Sarah can be seen riding her bike outside, swimming, even kicking around the soccer ball.

Sarah's case received national attention and was widely covered by CNN. According to policy documents, a high-profile media case was the catalyst for the first change in policy.

CNN's Jason Carroll, Ross Levitt, Laura Ly, Rande Iaboni and Chris Welch contributed to this report.

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