Dying girl’s desperate parents sue Secy. Sebelius over transplant policy

Updated
10-year-old Sarah Murnaghan, who suffers from end-stage cystic fibrosis, is waiting on the organ transplant network to decide whether she can receive life...
10-year-old Sarah Murnaghan, who suffers from end-stage cystic fibrosis, is waiting on the organ transplant network to decide whether she can receive life...

A little girl with just weeks to live may have been given a second chance on Wednesday, after a federal judge told Health and Human Services Secretary Kathleen Sebelius to hold off on enforcing a policy that prevents the girl from receiving life-saving surgery.

The ruling was in response to an emergency motion filed Wednesday by the parents of Sarah Murnaghan, age 10, against Sebelius on the grounds of discrimination. It’s their latest move in a desperate mission, and one that could mean life or death for their daughter.

Murnaghan has been in an intensive care unit at the Children’s Hospital in Pennsylvania for several months, waiting on transplant surgery that hasn’t happened.  The ten-year-old suffers from end-stage cystic fibrosis, and is on supplemental oxygen every second of her young life. Without a lung transplant, her chances to live diminish by the day.

Standing between Murnaghan and survival is a national transplant system that seems stacked against children in the most desperate of circumstances. Donations of children’s lungs are infrequent, and the policy excludes those under 12 from receiving surgically modified adult lungs.

The organ transplant network will hold an emergency review meeting on Monday, reports NBC News’ Kelly O’Donnell.

In an interview with msnbc’s Thomas Roberts, Murnaghan’s father, Fran, insisted that they have never asked for special treatment:  “We have never asked for an exception. We have never asked for Sarah to jump in front of anyone else.  All we have asked for is that she be treated equally.”

Fran and Janet Murnaghan’s lawsuit against Secretary Sebelius was filed just days after she declined to change the policy and intervene on their behalf.  “This is an incredibly agonizing situation where someone lives and someone dies,” Sebelius told members of Congress earlier this week.  “I would suggest that the rules that are in place and reviewed on a regular basis are there because the worst of all worlds, in my mind, is to have some individual pick who lives or dies.”

In their lawsuit, Fran and Janet Murnaghan claim Secretary Kathleen Sebelius has failed to take the action that could have made it possible for their daughter to receive donated adult lungs. They allege that Sebelius “had no sound reason for leaving in place a policy that discriminates against children.”

Fran Murnaghan said Wednesday that he was devastated by Sebelius’ comments. “She talks of her inability to do something, which we disagree with,” he said.

Looking down at notes on his cell phone, Murnaghan then directed a question directly at Sebelius:  “Madame Secretary, do you feel, or do you support a fair process for all children, based on medical judgment and need, and not an arbitrary age barrier?”

Even as they appeal to the courts, Fran and Janet Murnaghan are making a plea to the public.  They are asking anyone who might lose a loved one to consider a direct donation to their daughter, hoping for a miracle before it’s too late.

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Dying girl's desperate parents sue Secy. Sebelius over transplant policy

Updated