Murnaghans Face Backlash After Sarah’s Lung Transplant

The Murnaghan Family(PHILADELPHIA) -- Sarah Murnaghan, the 10-year-old girl whose family successfully sued to make her more likely to get a pair of adult lungs, may have gotten a boost from public attention before her lung transplant last week, but now that it's over, some of that attention has turned negative.

On Friday, June 14, Sarah's mother, Janet Murnaghan, posted a list of "facts" about lung transplants to her Facebook page, explaining that she'd seen a lot of misinformation "out there" and wanted to clarify a few things.

Murnaghan then said her Facebook page was for supporters only, and she didn't want to be tagged in anything in which people might speak negatively about her in the comments section.

On Sunday night, the "Save Sarah Murnaghan" Facebook page moderator addressed even more negative comments. The Murnaghan family spokeswoman said she did not know who created the page.

"I CANT BELIEVE SOME OF THE NEG COMMENTS," the moderator wrote. "Rude !!! rude !! rude !!!...please don't make neg comments ... this page is to encourage!!"

Federal Judge Michael Baylson drew criticism from the medical and bioethics communities for his June 5 decision to grant a temporary restraining order against Health and Human Services Secretary Kathleen Sebelius to prevent her from enforcing the so-called Under 12 Rule for Sarah.

"I think we can all sympathize with the plight of a young girl, but maybe a 13-year-old girl waiting for an adult organ is the one who didn't get a transplant," said Dr. Sander Florman, who directs the Mount Sinai Recanati/Miller Transplantation Institute in New York and hasn't treated Sarah. "I think it sets a very dangerous precedent to have a court deciding medical necessities and allocation even if the rules aren't right."

Some commenters on ABC News called for Sebelius to be "tarred and feathered" for initially refusing to make an exception for Sarah, while others passionately argued that Sarah's new lungs would have better served an adult.

The ruling -- and eventual transplant -- also prompted editorials in the Philly Post of Philadelphia Magazine, the Chicago Tribune and others in which writers argued that they hoped Sarah's court battle wouldn't encourage others to seek legal action to trump medical guidelines. The Philadelphia Magazine editorial was titled "Maybe Sarah Murnaghan Shouldn't Get a Lung Transplant."

Sarah's June 12 lung transplant from an adult donor was the 11th of its kind since 1987. The last transplant from a donor older than 18 to a child younger than 12 took place a few months ago, according to an Organ Procurement and Transplantation Network spokeswoman. The one before that happened in 2006, when the Under 12 Rule was new.

Murnaghan updated her Facebook page to say that Sarah's recovery was difficult but she was slowly improving. Sarah was still "fully sedated and critical" Sunday night but made positive "baby steps" by Monday morning.

As Murnaghan addressed negative commenters on Facebook Friday night, she wrote that the Organ Procurement and Transplantation Network ultimately "agreed" with her family "and has changed their policy for ALL kids so that children like Sarah can get on the over-12 list if their doctors deem it appropriate medically."

OPTN actually voted to keep the Under 12 Rule but added a part that allows for occasional exceptions. These children have to be recommended by their doctors and then have their cases reviewed by a national board before they can actually be exempted from the Under 12 Rule.

Here's how the Under 12 Rule -- which is more like a series of rules -- actually works.

Lung transplant candidates older than 12 are assigned a lung allocation score, or LAS, based on a complex mathematical formula that includes the patient's age and size. For transplant patients younger than 12 -- of which there are 20 nationally compared with about 1,600 adults -- the LAS is not used. Instead, patients are broken into "priority 1" and "priority 2." It's this difference that has been called discriminatory in court.

"If you are under 12 it is the amount of time you have waited that matters," Murnaghan wrote in her clarification post. "So if you are dying and have been on the list one hour you will NOT get the lungs."

This is not 100-percent true. Although time on the list is considered, an OPTN spokeswoman told ABC News that it's not the only thing that matters. Instead, lungs are allocated to the 20 children under 12 on the list by medical urgency, blood type and time on the list.

Children get priority for lungs donated from children younger than 12, but they have to wait for children between 12 and 17 to decline lungs donated from 12- to 17-year-olds before they get a chance at them. Lungs donated by anyone older than 18 are offered to all candidates older than 12, depending on their LAS. Only if all local matching candidates 12 and older decline the adult lungs can they be offered to children within 500 miles of the hospital where the lungs were harvested.

Copyright 2013 ABC News Radio

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