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: