PHILADELPHIA (CBSNewYork) — The life of a 10-year-old girl is on the line in a battle over federal guidelines.
As CBS 2’s Kristine Johnson reported Monday, Sarah Murnaghan of Philadelphia has end-stage cystic fibrosis. She is at the top of the child’s transplant list, but rules may prevent her from getting the lungs she needs to save her life.
Meanwhile, Sarah’s lungs are getting weaker and weaker. She is now in intensive care and wise beyond her years – as she knows she needs a transplant and is in a battle for her life.
“No! I’m never going to quit! Never! Never!” she said.
Sarah’s parents are not quitting either. But they are frustrated because on Friday, the federal government refused to intervene.
“Somebody needs to stand up and say this isn’t right,” said Sarah’s mother, Janet Murnaghan. “This is a human issue. This isn’t politics. This is a human issue.”
Even though Sarah is at the top of the child’s transplant list in her region, and has been waiting for 18 months, federal guidelines disqualify her for an adult lung until she is 12 unless every other adult on the waiting list turns down a donor lung.
In an e-mail, U.S. Health and Human Services Secretary Kathleen Sebelius told Sarah’s parents she is not authorized to intervene. But she is ordering a transplant policy review.
She added: “I know this is not the answer you were hoping to receive. My prayers are with you.”
Sarah’s family was not satisfied.
“She says, ‘Oh, I’m so sorry. I know this isn’t what you wanted to hear.’ It is in her legal authority,” Janet Murnaghan said. “We are going to let a kid die over red tape?”
Sarah’s mother said there is just one way to get around the federal guidelines.
“If you directly donate your loved one’s lungs to Sarah, the law cannot change that, and Sarah will use them and create a positive, wonderful life and legacy for your loved one,” Janet Murnaghan said. “I’m praying that somebody sees this story and is in a position to save my baby.”
While Sebelius has called for a policy review on lung transplants for children, any changes could take up to two years to implement.