A federal judge has made the painful ordeal of waiting for a lung transplant a bit smoother for an 11-year-old boy, Javier Acosta, and a 10-year-old girl, Sarah Murnaghan.
By suspending the age factor in the nation's transplant rules, U.S. District Judge Michael Baylson made Acosta and Murnaghan eligible to receive the organ from an adult match.
The organ transplant rules say children under age 12 must wait for pediatric lungs to become available, or wait at the end of the adult list, which included adults who aren't as critically ill.
Lawsuits seeking for the children to be put on the adult list said that unless they were put on it, they would surely die. Like Murnaghan, Acosta has cystic fibrosis. He is in intensive care in Children's Hospital of Philadelphia. He had a brother who died because of the same disease.
"We're not asking to jump to the front,” said Acosta’s mother, Milagros Martinez, according to myfoxphilly.com. “We're just asking for it to be based on the severity of condition."
"He will die, basically,” Martinez said of her son, according to myfoxphilly.com. "It's the end of his life at 11. I feel that's unfair because of a policy I feel it shouldn't be that way."
The judge essentially forced Health and Human Services Secretary Kathleen Sebelius, who refused to intervene in Murnaghan's case, to put the two children on the adult list.
Sebelius had pointed out that three other children also at Children's Hospital of Philadelphia were in the same condition, and 40 other seriously ill Pennsylvanians over the age of 12 also were awaiting a lung transplant.
The Murnaghans challenged a lung transplant policy that matches children under 12 with pediatric donors, who are rare, or offers them adult lungs only after adolescents and adults on the waiting list have a chance at them.
The family said their daughter will die without a new set of lungs soon and argued that children under 12 should have equal access to adult donations. Acosta's family, who is from New York City, filed a similar lawsuit saying the boy may die on the waiting list like his brother did two years ago.
"The problem is we can't build a system around making exceptions for everybody that isn't getting the transplant when they need it," Dr. John Roberts, who heads the Organ Procurement and Transplantation Network's board, said Thursday.
Murnaghan's family, through a spokeswoman, said her condition had worsened Thursday at Children's Hospital of Philadelphia.
Johns Hopkins University transplant surgeon Dr. Dorry Segev said: "Every choice that is made in transplantation in favor of one patient means the likely death on the list for another patient."
Meanwhile, Martinez is too familiar with the ravages of cystic fibrosis.
It killed her youngest son, who was 11, about four years ago, according to myfoxphilly.com.
"It's very difficult for me to tell him what happened to your brother will happen to you," she told myfoxphilly.com, adding that Acosta feared routine things like falling asleep.
"As a mom I have to protect and tell him you're not going to die tomorrow. He's afraid to go to sleep at night because he thinks he won't wake up. I tell him he'll be fine."
The Associated Press contributed to this report.