The Chaotic, Political, Ethically Murky Case of the 10-Year-Old Girl Who Needed a New Pair of Lungs

Health and medicine explained.
June 19 2013 4:08 PM

How to Fix the Organ Transplant Shortage

The chaotic, ethically murky case of a 10-year-old girl in need of lungs.

On October 14 1987, 18 month old Jessica McClure fell into an eight inch diameter well pipe in the backyard of her aunt in Midland, Texas. She remained there for 58 hours before being rescued at about 8:30 pm on October 16, 1987.
In 1987 18-month-old Jessica McClure spent 58 hours in an 8-inch-diameter well pipe before being rescued. Her nationally televised plight, like that of cystic fibrosis patient Sarah Murnaghan, demostrates the "rule of rescue." People rush to save individuals who are clearly in harm's way—but what about the unseen victims?

Photo by Barbara Laing/Getty Images

The plight of Sarah Murnaghan made headlines over the past several weeks. The 10-year-old girl suffers from cystic fibrosis, a crippling respiratory ailment. She was dying, but she was deemed ineligible—then, after an uproar, eligible—for an adult lung transplant. She received a new set of lungs on June 12.

At issue were rules set forth by the United Network for Organ Sharing, the non-profit that manages the national organ waiting list. It requires that the sickest children younger than 12 get priority for lungs donated from children younger than 12. Children age 12 and younger are eligible for lungs donated from 12- to 17-year-olds only after potential recipients between 12 and 17 have declined them. Lungs donated by adults are initially offered to all candidates older than 12.

Part of the rationale behind the “under 12 rule,” established in 2005 by the Organ Procurement Transplant Network, which is managed by UNOS, is that lungs from an adult would be too large for a child’s body. (There are no age-based cutoffs for transplanting organs other than lungs. The lobar structure of the liver makes it easier to reduce. Adult kidneys can be placed inside a child’s roomy abdominal cavity. But hearts must fit anatomical constraints.)  

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The age rule was also devised to compensate for a lack of good data for those under the age of 12. All lung transplant candidates over 12 are assigned a “lung allocation score” that reflects both the seriousness of a patient’s medical status and the likelihood of a successful operation. This score, in addition to blood type and the geographic distance between the candidate and the hospital with the lung donor, determines wait-list priority for receiving adult lungs. Patients under 12 are not assigned an LAS because the number of children in need of lung transplants is so small as to make statistical modeling difficult.  

The devilish problem for children is that the donation numbers are badly skewed against them. Transplantable lungs from adults outnumber pediatric donations about fiftyfold.  According to the OPTN, Sarah's lung transplant from an adult donor is only the 11th of its kind since 1987, when national record-keeping on transplantation began.

As Sarah's lungs began to fail, her frantic parents, Janet and Francis Murnaghan of Newtown Square, Pa., made public pleas to get her equal consideration with adults in need of lung transplants.

From a clinical standpoint, Sarah’s case sparked the question of whether the age rule is valid. After all, how great is the difference between a 10-year-old child and one who is one day past her 12th birthday? What’s more, Sarah’s physicians were confident that they could trim adult lungs to fit her chest cavity.

Against this backdrop, a fast-moving drama played out.

On Tuesday, June 4, lawmakers got involved, urging Health and Human Services Secretary Kathleen Sebelius, whose agency contracts with UNOS, to intervene. "I'm begging you," Rep. Lou Barletta implored Sebelius, "she has three to five weeks to live." Sebelius declined.

On Wednesday, June 5, District Court Judge Michael Baylson of Philadelphia overruled the secretary and blocked her from enforcing the age restrictions on children. This allowed Sarah to move to the front of the queue for adult lungs on the basis of the severity of her disease. Within a day, the mother of an 11-year-old Bronx boy at the same hospital and suffering from cystic fibrosis filed a lawsuit asking the judge to add him to the list. Javier Acosta, whose brother died of the disease in 2009 before he could receive a transplant, was also permitted to join the list of adults awaiting lungs.