A second mother, Milagros Martinez, filed suit on behalf of her 11-year-old son Javier Acosta, on Thursday. Javier also has just weeks to live and his older brother Jovan died waiting for a lung transplant in 2009, her lawyers say. HHS and the OPTN immediately suspended the rules for him, too.
"We're not trying to skip ahead of anyone," Martinez said at a news conference Saturday. "We just want him to have a fighting chance."
Both children are hospitalized at Children's Hospital of Philadelphia. Sarah's been there for three months and her parents estimate she may have three to five weeks to live without a transplant. They launched their campaign when they learned about a complicated rule separating children from adults on the organ transplant allocation list.
It's clear there are not nearly enough organs available for donation in the U.S. According to OPTN, 75,742 people are actively waiting for organ transplants, and just 6,891 transplants involving donations from 3,412 people have been done.
Transplants are done by region to ensure that organs get to patients quickly, when they are most likely to survive. They are also allocated based on need, age and other factors.
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OPTN data shows that 222 people are on the list for a lung transplant in organ allocation Region 2, which includes Pennsylvania. Six children younger than 10 are on the list, and eight children aged 11 to 17 are on the list.
Melissa Hatch of the Philadelphia-based law firm Pepper Hamilton LLP represents both Sarah and Javier. She says the glitch in the rules only applies to about 16 children nationwide who are in a very unusual position.
"I have been listening to some of the coverage and I see people saying these children are trying to jump the line," Hatch told NBC News. "But I do think they are mistaken. There are very few children in this position. To get the relief that we seek we need to show that this law is arbitrary and capricious or otherwise illegal. That is a very difficult standard. We believe we meet it."
The OPTN organ allocation system has several tiers based on age – young children, adolescents and adults. Twelve years old is one cutoff.
"What the under-12 rule did was two things. If you are a child under 12 you are not on the adult waiting list unless your doctor says you can be," Hatch says. She says Javier and Sarah's doctors say they both are large enough to take an adult lung transplant.
"But the rule also says you have to go to the very back of the adult line," says Hatch. That, she says, is a virtual death sentence for both children.
"I think that's a great oversimplification," says Joel Newman of the United Network for Organ Sharing, which administers the OPTN. "Would every lung have to be offered to every adult in the U.S. before it would be considered for a child? The answer to that would be no."
Organs are made available to patients first within a 500-mile radius of the donor's location. The patient's team has an hour to say yes or no before the organ is offered to someone else. If there are no matches or takers, then local children are offered the organ before it's offered to adults in a wider area.
Hatch hopes the OPTN suspends its rules while they are reviewed. "That meeting on Monday is really critical," she said. "Sarah will die within days or weeks. Javier will die within weeks or months. His brother was a month away from the 12-year-old cutoff when he died."
Hatch, Newman and the experts agree – the best solution would be for more organs to be made available.
"There is a critical shortage of organ donors in the United States," Hatch says. "It is very, very easy to become an organ donor. One problem driving this is that the pool for childrens' lungs is 50 times smaller than the pool for adult lungs."
Parents must make the decision to donate a dead or dying child's organs quickly, at a time of overwhelming grief. But Hatch urges them to. "All you have to do is look at these two," she says. "New lungs could bring new life to these children. It would be an incredible gift."
By Maggie Fox, NBC News