'She's going to be killed by red tape': Distraught mom speaks out after health secretary REFUSES to bend the rules to give girl, 10, with weeks to live a lung transplant

Doctors say Sarah Murnaghan, 10, will die in three to five weeks unless she gets a lung transplant

U.S. health secretary Kathleen Sebelius has refused to overrule a federal regulation which states a patient has to 12 to get an adult transplant

Sarah's mom has accused Sebelius of doing nothing to help her daughter and other children needing lung transplants

The issue has also become a political hot topic with Republicans urging Sebelius to think again



On Sunday the family made a public plea for a donor

The U.S. health secretary has turned down appeals to overrule a federal regulation that could save the life of a 10-year girl who desperately needs a lung transplant or faces dying in the next three to five weeks.



Health and Human Services Secretary Kathleen Sebelius described her decision as ‘incredibly agonizing’ when she told a congressional panel on Tuesday that she won't intervene in a transplant decision to save a dying Pennsylvania girl.



Sarah Murnaghan doesn’t qualify for an adult lung transplant until the age of 12, according to federal regulations, Sebelius has the authority to waive that rule on her behalf.



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Battle: Ten-year-old Sarah Murnaghan has been on the waiting list for a lung transplant for 18 months

'She [Sebelius] said "Oh I'm so sorry I know this isn't what you wanted to hear,'" Sarah’s distraught mom Janet told Fox45 after hearing of Sebelius’ verdict.



'It is in her legal authority. We're going to let a kid die over red tape. Somebody needs to stand up and say this isn't right. This is a human issue this isn't politics.’

Sarah has been hospitalized at Children's Hospital of Philadelphia for three months with end-stage cystic fibrosis and is on a ventilator. Her family wants all children younger than 12 to be eligible for adult lungs because so few pediatric lungs are available.



Under current policy, only patients 12 and over can join the list. But Sarah's transplant doctors say she is medically eligible for an adult lung.

'Incredibly agonizing': U.S. Department of Health & Human Services Secretary Kathleen Sebelius told a congressional panel on Tuesday that she wouldn't overrule federal regulations to help save young Janet

Emotional: Before Wednesday's reprieve Mom Janet had said she refused to tell her young daughter just how sick she really is

The change would add perhaps 20 children from ages 8 to 11 to the adult waiting list, which has more than 1,600 people on it, according to Sharon Ruddock, Sarah's aunt.



She said Sebelius' remarks confused the family because they want a policy change for all pre-adolescent children awaiting lung transplants, not just Sarah.



‘One moment they say we're asking for an exception for Sarah. The next moment they say we're asking for sweeping changes and it has to be studied’ Ruddock said Tuesday.



Sebelius has called for a review of pediatric transplant policies, but the Murnaghans say Sarah doesn't have time for that.

The issue has also become a political football, on Tuesday House Republicans accused Sebelius of refusing to save Sarah at a House Education and the Workforce Committee hearing on her department's budget .



‘I'm begging you. ... She has three to five weeks to live. Please suspend the rules,’ Rep. Lou Barletta, R-Pa., urged Sebelius.



Sebelius conceded the case was an 'incredibly agonizing situation' but said many complex factors go into the transplant-list formula

There is 'so much bullcrap around this place, and we have the chance to save someone’s life - there’s no logic to this,' an agitated Barletta said, as he and Sebelius at times talked over each other.

'It simply takes your signature,' Rep. Tom Price, R-Ga., a former doctor and one of the Republican Party’s most active House members on health policy, told Sebelius.



Price said the policy review will take 'a year' to complete - too long to be of any help to Sarah Murnaghan.



'This young lady will be dead,' Price said.

Sebelius conceded the case was an ‘incredibly agonizing situation’ but said many complex factors go into the transplant-list formula.

‘The medical evidence and the transplant doctors who are making the rule - and have had the rule in place since 2005 making a delineation between pediatric and adult lungs, because lungs are different that other organs - that it’s based on the survivability [chances].’

Sebelius reminded Barletta that 40 people in Pennsylvania are on the ‘highest acuity list’ for lung transplants.

Fears: Janet and Fran Murnaghan filed an emergency motion for the temporary restraining order on Wednesday morning, the day after U.S. health secretary Sebelius had turned down their appeals

Researchers have less data on lung transplants in pre-adolescents because only about 20 a year are done. And young children suffer from different lung diseases, making it harder to weigh their risk versus their chance of surviving a transplant, according to a letter to Sebelius from Dr. John P.



Roberts, president of the Organ Procurement and Transplantation Network.



Amid concerns about the higher mortality rate in pediatric patients waiting for lung transplants, the network has tweaked its policies in recent years, Roberts said.



The new rules give the younger children priority over adults when adolescent lungs become available and give the sickest children priority in a 1,000-mile radius, a broader range than used in the adult system, he said in the letter, which was shared by the office of Rep. Patrick Meehan, R-Pa.



Meehan, in a letter to Sebelius, said Sarah's doctors are confident they can perform a successful transplant on her. And he said she would jump to the top of the adult list if placed there, given the stage of her disease.



Ruddock, the aunt, called it ‘a question of morality’ that children get a place in the adult line, given that a far higher percentage of children die waiting for pediatric lungs than do adults on that waiting list.



‘Do you put them at the back of the line if you're not sure how to measure (their potential outcome)? Or do you put them in the line?’ she said.

Sisterly: Despite her poor prognosis, Sarah remains upbeat about her chances of getting a transplant

Celebration: Sarah and her mom Janet are celebrating after a federal judge overruled a law preventing children under 12 from receiving adult organs

CHILDREN'S LUNG TRANSPLANTS: WHAT DOES THE SYSTEM SAY?

The system determining who is allocated lungs for transplants was overhauled in 2004 and again in 2008. Doctors claim the changes have allowed fewer people on the waiting list to die.

The changes meant that lung transplants are allocated by age groups. Those over the age of 12 are given an allocation score based on how urgently they need a transplant and the severity of their medical condition. Those who would benefit most are placed highest and given first priority. For children under 12, lungs are only allocated based on the time they've spent on the list.

One problem is that there are few pediatric lungs available for transplant. In 2012, there were just 10 transplants for Sarah's age group, but more than 1,700 for adults, according to the United Network for Organ Sharing.

On Sunday Janet and Fran Murnaghan asked the public directly for a lung donation to help save their daughter's life.



'Essentially, Sarah has been left to die,' Sarah's parents said in the statement.

Sarah, from Newtown Square, Pennsylvania, was born with cystic fibrosis and she now lives at Children's Hospital of Philadelphia as her lungs continue to deteriorate.

She relies on a ventilator to breathe and has been on the waiting list for new lungs for 18 months - and is top of the priority list for children in Delaware, Maryland, New Jersey, Pennsylvania, West Virginia and northern Virginia.

Her parents learned just weeks ago that Sarah would be given a better chance if she were waiting for adult lungs, which are reserved for people aged 12 or over.

'It shouldn't be about their age,' she told CNN. 'If she's the sickest person, she should qualify.'

'The law is, in my view, age discrimination,' she added to the Philadelphia Inquirer . 'I don't know if this is too late to make a difference for Sarah. But we'll keep fighting it.'



Dr. Stuart Sweet from St. Louis Children's Hospital, who helped write the pediatric transplant system, said the case 'tugs at his heart' but that no system is perfect.

He said that if he changed the system for Sarah's advantage, 'there's another patient, very likely an adolescent, who gets a disadvantage'.



'We've built a system that tries to be as fair to everyone as possible,' he contended.

Her parents are hopeful that the issue can be beaten by someone stepping forward with a direct donation to Sarah.

Support: Sarah, who has been living in hospital since February, is pictured with her three younger siblings

For now, they have decided not to tell Sarah, who is the eldest of four siblings, just how sick she is.



'I'm not going to tell her she's dying, because she's 10,' Janet told CNN.

'I'm going to tell her we're going to keep fighting. I don't want to scare her.'

Sarah, who has been outside just twice in the last 100 days, said that she misses school, where she could ' at least try and act like all the other normal children'.

But even as her lungs deteriorate, the young girl remains positive, certain that she will beat her illness and be granted a lung transplant.



'We will [get them]!' she said. 'I can't wait to take my first breath with new lungs. I can close my eyes right now and imagine it... I'm never going to quit! Never, never!'