TODAY   |  June 05, 2013

Parents of girl, 10, fight for lung transplant

Ten-year-old Sarah Murnaghan is waiting for a lung transplant while struggling with cystic fibrosis. Her parents say she should be at the top of the list, but because she is younger than 12, rules require her to wait for a child’s lung. NBC’s Tom Costello reports.

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>>> the fate of a 10-year-old girl who needs a lung transplant led to a confrontation tuesday on capitol hill . national transplant rules don't allow the child to qualify for adult lungs. nbc's tom costello is in washington with more on this story. good morning, tom.

>> hi, natalie. 10-year-old sarah murnaghan spent the last ten months waiting for a lung transplant . because she's not 12 she must wait for a child's lung. the nation's top health administrator says she can't change the rules for one patient. how i wonder --

>> reporter: for sarah murnaghan every breath is a struggle. cystic fibrosis has filled her lungs with mucus and moved her to the top of the transplant list for children but there are very few children's lungs available and national transplant rules created by surgeons don't allow a child under the age of 12 to receive surgically modified adult lungs, even though sarah could benefit.

>> thank you, madam secretary, for coming.

>> reporter: on tuesday, lawmakers urged the secretary of health and human services to override the rules.

>> the study will take over a year. this young lady will be dead.

>> reporter: but secretary sebelius declined to intervene.

>> the worst of all worlds in my mind is to have some individual pick and choose who lives and who dies.

>> reporter: sebelius says there are already 40 patients 12 and older in pennsylvania alone waiting for an adult lung daughter. sarah 's mother says the sickest patients should be at the top of the list.

>> the sick don't get any higher for my child. she is 10 years old, has weeks to live, she is struggling and fighting with each breath and we have no greater chance of getting lungs today than we did when she was fairly healthy six months ago because the severity of her illness doesn't matter.

>> reporter: for three months sarah has waited at children's hospital of philadelphia for a lung transplant . the ethical question are strict guidelines standing in the way of sarah and other children from getting a chance at life?

>> of course the parents want the exception made. we always have to remember that the statistic of the other couple hundred people on the wait list who are adults, you know, parents of children, husbands, wives.

>> an online petition urging the government to change the policies to allow children to receive adult lungs has already garnered 335,000 signatures. meanwhile sarah 's parents are pleading with any family who suffers a tragic loss to consider a direct lung donation to sarah . natalie?

>> we wish them the best, tom costello, thank you.