Legal restrictions defining organ transplants may cause a 10- years-old Philadelphia girl Sarah Murnaghan left to die because she is unable to receive a lung transplant.
Cystic Fibrosis is an autosomal recessive genetic disorder that affects most critically the lungs, and also the pancreas, liver, and intestine. It is fatal.
Sarah Murnaghan is a 10 year old girl from Philadelphia who has the disease, and has been waiting for a transplant her entire life. In the last 18 months her ability to breathe has been rapidly deteriorating. She could die in the next few months if she doesn’t receive a donor’s organ.
It sounds simple when you know that she is at the top of the list for a pediatric lung transplant in her region. She could receive a modified adult lung, but the laws are restrictive. According to federal law, children under 12 cannot receive adult lungs unless everyone in her region declines.
U.S. Health and Human Services Secretary Kathleen Sebelius has called on officials to review the nation’s lung transplant policy for children, but any change could take up to two years.
According to the present rules, Sarah is destined to die.
A statement from Fran and Janet Murnaghan welcomed the policy review as a “positive step.”
“However, Sarah, and other children like her who need a transplant now, do not have the luxury of time to wait for a lengthy bureaucratic change,” the parents said. “Essentially, Sarah has been left to die.”
The federal agency displayed compassion for Sarah and her parents predicament.
“Our heart goes out to any family that is dealing with a loved one who is on a waiting list for an organ transplant,” the statement said. “Given the significant disparity in the number of transplantable organs to the number of people in need of an organ, (the Organ Procurement and Transplantation Network) has regulations and policies to ensure that decisions are based on the best medical science and the most equitable process in a very difficult situation.”
The Murnaghan family has asked anyone who may be able to designate a lung for Sarah to make the specifics required and recognized by law.
“If you want to directly donate your loved one’s lungs to Sarah, the law cannot change that. And Sarah will use that and create a positive and wonderful life and legacy for your loved one,” Janet Murnaghan told CNN.
“I’m praying that somebody sees this story and is in a position to save my baby.”
Sunday night the family was frightened by a severe fever and increased carbon dioxide levels.
The family has made a plea to Sebilius to intercede on Sarah’s behalf.
“We are going to let a kid die over red tape. Somebody needs to stand up that this isn’t right, this is a human issue. This isn’t politics, this is a human issue,” Janet Murnaghan said.
Petitions have been collected, and pleas to the Obama administration have been made on Sarah’s behalf.
Without immediate intervention, a 10 year old Philadelphia girl will die if she doesn’t receive a lung transplant in the immediate future.
The Guardian Express