March 5, 2014 -- As someone who sued to get her dying daughter a controversial adult lung transplant last summer, Janet Murnaghan said she had learned to be OK with her critics.
That is, until a Facebook page was set up to question the ethics of Sarah Murnaghan’s transplant, slamming the lawsuit for being unfair to other patients and criticizing the family’s care of 11-year-old Sarah.
“I want to be having an open discussion about this,” Janet Murnaghan told ABCNews.com. “What isn’t OK is when my 11-year-old child is thrown into it. ... What crossed a line for me was their cruel tactics toward Sarah.”
Hundreds of supporters filed reports to Facebook and flooded the page with messages and posts. They said they were calling lawyers, the police and even members of Congress to get the page removed.
Brief History of the Murnaghan Case
Janet Murnaghan started a Change.org petition at the end of May 2013, calling attention to what would become known as the Under 12 Rule, which said that even though Sarah would be given priority when pediatric lungs became available, adult lungs would have to be offered to adult matches in her region before they could be offered to her.
On June 5, after the Murnaghans sued, calling the Under 12 Rule discriminatory, a federal judge issued a temporary restraining order to prevent U.S. Health and Human Services Secretary Kathleen Sebelius from enforcing the rule for Sarah, who was 10 at the time. By June 10, the Organ Transplantation and Procurement Network re-evaluated the Under 12 Rule and decided to keep it but created a mechanism for exceptions, depending on the case.
Sarah received a double lung transplant from an adult donor on June 12, making her the 11th child to receive one since 1987, but the transplant failed. On June 15, Sarah received a second lung transplant from an adult donor.
She left the Children’s Hospital of Philadelphia in late August, and Janet Murnaghan told ABCNews.com she is doing better every day.
Now that Sarah is home, Janet Murnaghan said she has turned her focus toward changing organ transplant policies she says are “arbitrary” and “unfair.”
“For me, right now isn’t even about Sarah. We’re done. We did this,” she said, adding that it would be easier to walk away now that her child has had a transplant. “Today, I continue this because I think the system is broken, and I think we all need to talk about that.”
But Dr. Geoffrey Kurland, who directs the children’s lung transplantation program at the Children’s Hospital of Pittsburgh, said he doesn’t blame the Murnaghans “one iota” for feeling the system was unfair as they said with their dying 10-year-old, but said with organ allocation, nothing seems fair.
He said the organ allocation system was designed based on scientific data to find the patient that not only needs a transplant the most, but will benefit the most from that transplant.
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 about 20 nationally at any given time compared with about 1,600 adults -- the LAS is not used because there isn’t enough data to prove that it can determine the sickest patients who would also live the longest. Instead, patients are broken into "priority 1" and "priority 2." It's this difference that has been called discriminatory in court.
“It wasn’t like they threw a dart at the board and came up with number 12 and said here’s the number,” Kurland said. “That’s not how it was done at all.”
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.
Although the Murnaghan case didn’t change the rules for all children under 12, it created a mechanism for the Organ Procurement and Transplantation Network, or OPTN, which is under contract with the federal government to manage the organ transplant waiting list and allocation process, to grant exceptions for under-12-year-olds on a case-by-case basis.
The Facebook Group
The Facebook group Janet Murnaghan wanted taken down, “Discussing Lung Transplantation and Sarah Murnaghan,” debates whether Sarah should have gotten the adult lung transplant and has questioned whether suing was fair to the other patients on the organ transplant waiting list. They also discuss other transplant cases as well as technological and ethical issues surrounding transplants and recovery.
But the group also refers to Janet Murnaghan’s group of supporters as “her cult” and says the happy ending story she’s told the media isn’t the truth. It pays close attention to reports about Sarah’s health and scrutinizes her appearances to show that she isn’t recovering as quickly as other children who have received lung transplants from child donors.
In one post the administrator suggested Sarah had two unacknowledged seizures during an interview with Fox News. In another, the administrator speculated that Sarah was in “intense pain” and would probably have a tracheostomy tube in her neck for the rest of her life.
“We have a healthy criticism of the lawsuit the Murnaghan family brought against the U.S. government; we believe their complaint was unmerited and erodes the foundation of public trust in the way scarce organs are allocated to recipients,” the Facebook page’s administrator told ABCNews.com on condition of anonymity to avoid having her family drawn into the controversy surrounding it. “The sad fact is not everyone who needs an organ will get an organ. Transplant medicine is rationed medicine because not enough organs are donated each year to help those in need.”
Janet Murnaghan has insisted she did not want to stifle free speech, but asked for help taking the page down because she wants to protect her daughter. In a previous post asking supporters to help report the page, she said people on it were “wishing [her] child death.”
The administrator said no one on the discussion page has ever written that they wanted anything bad to happen to Sarah, contrary to Janet Murnaghan’s accusation.
“The Facebook page provides helpful links on a variety of topics relating to lung transplant: what to expect before, during and after transplant as well as shared personal stories and discussion on current event topics,” the administrator said.
For example, “Discussing Lung Transplantation and Sarah Murnaghan” has talked about Angelique Boston, a 12-year-old in Reading, Penn., who needs a double lung transplant and a bone marrow transplant because of a rare immunodeficiency disease. Angelique is over 12, so wouldn’t be affected by the series of rules that Murnaghan called discriminatory, but she is small for her age, weighing only 53 pounds.
“Our problem is the opposite" of Sarah’s, Angelique’s mother, Sara Boston, told ABCNews.com. “She’s too small for adult lungs. She should be able to have access to pediatric lungs if pediatric cases can have access to adult lungs. If it works that way for kids like Sarah, then it should work that way for my daughter. It needs to be fair.”
Kurland, Angelique’s doctor, asked the OPTN to allow her to be considered for pediatric lungs, but said the request was denied. When asked whether he thought the only way to change the rules was to sue, he said he didn’t know.
Still, Sara Boston said she wasn’t against Sarah Murnaghan getting her lung transplants. In fact, Angel and Sarah Murnaghan are friends who chat on Skype.
“I am concerned that she’s going to have to compete with a 10-year-old because she’s small herself,” Boston said.
Crossing the Line
But what bothered Janet Murnaghan most, she said, was seeing the posts on the “Discussing Lung Transplantation and Sarah Murnaghan” Facebook page criticizing her for allowing Sarah to go to an event without a face mask to protect her from illnesses.
Like any other organ transplant patient, Sarah was put on drugs to suppress her immune system to prevent her body from rejecting the new lungs, leaving her extra vulnerable to viruses and bacteria.
During the first six months after Sarah’s two double lung transplants, Janet Murnaghan barely let Sarah leave the house, let alone take off her mask, she said. But soon Sarah’s doses of immune-suppressing drugs decreased, so she no longer needed to wear a mask.
Still, when it came time for Sarah to receive an award at a ceremony in Philadelphia in mid-February, Janet Murnaghan said her doctors had to convince her Sarah didn’t need the mask.
“They had to encourage me not to overprotect her,” Janet Murnaghan said. The Facebook group’s criticism of her care that night "was really upsetting. My initial response when they attacked Sarah and when they attacked my care of Sarah was to be upset.”
The Facebook Attack
So Janet Murnaghan posted to her Facebook page on Feb. 21 to ask her thousands of followers to report the group to Facebook for harassment and have it taken down. At least 235 people responded to let her know they did it, she said.
Messages flooded the page administrator’s inbox. Some messages were screamed in capital letters and included four-letter words, while others called the administrator “sick” and a “bully.” People told the administrator that the Murnaghans would sue.
But the page stayed put, and traffic to it increased, the administrator said. The administrator began to get messages thanking the page for presenting a different point of view of the Murnaghans’ story and saying that they, too, disagreed with the way in which Sarah got her new lungs.
“Based on their actions with me, I believe the Murnaghans are not nice people, bent on fame and want to squash anyone who has a different opinion or perspective of what they did with the lawsuit,” the administrator wrote on her page. “Now everyone here gets to see what the Murnaghan family is really like. Not so much the ‘inspiring’ family who championed a great cause. More like thugs hellbent on getting their way.”
Deleting the Page – Temporarily
Then, on March 4, the “Discussing Lung Transplantation and Sarah Murnaghan” Facebook page was gone, and those who complained about it received notification that Facebook took it down. They then went to Facebook to announce the victory.
“I appreciate that Facebook has recognized that many of the comments on the ‘Discussing Lung Transplantation and Sarah Murnaghan’ were cruel to Sarah and violated their community standards,” Murnaghan wrote in a post after one that thanked her Facebook friends for reporting the page.
But the page was back up before noon that same day because Facebook realized it removed the page by mistake, a Facebook spokesperson told ABCNews.com.
“The conversations that happen on Facebook –- and all the opinions expressed here -– mirror the diversity of the more than 1.2 billion people using our service,” a Facebook spokesperson told ABCNews.com, declining to go into specifics about the “Discussing Lung Transplantation and Sarah Murnaghan” page. “We encourage people to come to Facebook to challenge ideas, institutions, events, and practices.”
Janet Murnaghan’s followers were outraged, and again wrote that they would try to have the page removed, but she told them not to bother.
“Friends, I have had a good night sleep, and I have a request of all of you! I do not want to discuss that hateful page and their cruelty to Sarah here on Sarah's page anymore,” she wrote on her page, adding that giving them attention gives them a voice. “If you want to comment on this post to agree with me just say something nice about about [sic] Sarah.”