Boy Who Fought 'Under12 Rule' Gets Lung Transplant

PHOTO: equal inclusion in the adult lung transplant waiting list after a federal judge ruled in his favor.Courtesy Pepper Hamilton LLP
Javier Acosta, 11, became the second child this week to win equal inclusion in the adult lung transplant waiting list after a federal judge ruled in his favor.

A young boy who spent months lying a few beds away from Sarah Murnaghan at the Children's Hospital of Philadelphia awaiting a lung transplant received new lungs and is now recovering, his mother said Monday.

Twelve-year-old Javier Acosta underwent an adult double-lung transplant on Oct. 13, but his mother, Milagros Martinez, didn't want to announce it until he recovered from surgery.

"Although his prognosis is good, Javier is still in the hospital adjusting to his new lungs," Martinez said in a statement on Monday. "We are deeply grateful to the donor, the donor family and the wonderful doctors and staff at Children's Hospital of Philadelphia. We offer our sincere thanks to those who helped us and supported us and prayed for us. "

Read about Sarah Murnaghan's recovery.

Attorney Chad Holtzman represented Sarah and Javier when they each won a temporary restraining order against Health and Human Services Secretary Kathleen Sebelius to prevent her from enforcing what's been called the "Under 12 Rule." The rule effectively pushed the children to the bottom of the organ transplant list, they argued, because at the time, Javier and Sarah were younger than 12 and would therefore be offered adult lungs only after those lungs had been offered to other qualifying adults in the area.

"What makes Javier's situation even more heartbreaking is that Javier's brother ... died two years ago at the age of 11 while waiting for a lung transplant that could have saved his life," his lawyer wrote in the legal complaint at the time.

Holtzman and his team won Sarah's court order on June 5 by convincing federal Judge Michael Baylson that the Under 12 Rule was discriminatory. Sarah's doctor, Dr. Samuel Goldfarb, testified on her behalf.

Baylson asked the courtroom whether anyone knew of other children in the same situation. Goldfarb had another patient eligible for adult lungs but was not yet 12 years old: Javier.

"That night, Steve [Harvey, the head lawyer] went to the hospital to meet with Javier's mother," Holtzman said. "We started working up complaints with Javier's case so we could file it the next day."

So while officials at the Organ Procurement and Transplantation Network were creating a second database record for Sarah with a fake birthday to trick the system into thinking she was 12, lawyers were working to get the same thing for Javier.

The next afternoon, he, too, would be considered as a 12-year-old in the organ transplant system database.

Sarah, who turned 11 on Aug.7, underwent two double lung transplants in June, and went home from the hospital in late August.

On June 10, the Organ Transplantation and Procurement Network re-evaluated the Under 12 Rule and decided to keep it but created a mechanism for exceptions, depending on the case.