Boy on Lung Transplant Waiting List Happy for Sarah Murnaghan

Boy waiting for lung transplant happy Sarah Murnaghan got one.

June 14, 2013, 3:49 PM

June 15, 2013— -- Jordan Peterson is 10 years old, suffers from cystic fibrosis and is on the pediatric lung transplant waiting list -- just like Sarah Murnaghan, the Pennsylvania girl who received a lung transplant Wednesday after her family successfully sued to make her more likely to get lungs from an adult donor.

Medical and legal experts have criticized the judge for sidestepping Organ Transplantation and Procurement Network policy, but Jordan is just happy to see another cystic fibrosis kid get a lucky break.

"I'm very happy for her 'cause, you know, she needed 'em more than I did, and she was on a ventilator and she was dying, so I was definitely really happy for her," Jordan told from Houston, where his family relocated in September 2012 to be within a few hours of Texas Children's Hospital. They're originally from Fargo, N.D., but since Jordan's doctors are in Houston, they needed to be nearby in case donor lungs became available.

Although the nation has been focused on Sarah for the past few weeks, other patients awaiting organ transplants have been left to watch the story unfold and wonder what it means for them.

Dr. Sander Florman, who directs the Mount Sinai Recanati/Miller Transplantation Institute, said his patients awaiting liver and kidney transplants have already asked whether legal action might be the best way to get the organs they need.

"I said, 'It wouldn't be fair for you to do this and be successful,'" Florman said. "Go promote organ donation. ... That's what all physicians should be telling people, what the judge should be telling people."

On the flip side, Dr. Alan Reinach, a pulmonologist who works at Holy Redeemer Health System outside Philadelphia, said patients have neither asked him nor his colleagues about how Sarah's case would affect them.

Sarah's family argued that the so-called Under 12 Rule, an organ transplant policy, had been unfairly pushing Sarah to the bottom of the adult lung transplant waiting list because it required adult lungs to be offered to adults before they could be offered to anyone younger than 12.

Learn more about how the Under 12 Rule works, what the OPTN decided to change about it

Her lawyers convinced federal Judge Michael Baylson on June 5 that the Under 12 Rule was discriminatory, prompting a temporary restraining order against Health and Human Services Secretary Kathleen Sebelius to prevent her from enforcing it for Sarah.

Baylson's ruling forced OPTN to create a second organ transplant database entry for Sarah with a fake birthday to trick the system into thinking she was 12 years old. On June 12, she got her transplant, which involved having the adult lungs resized to fit her 10-year-old body. It's the 11th lung transplant from a donor older than 18 to a child younger 12 since 1987.

Although Jordan's father, Dan Peterson, said he understood Sarah's situation was dire, it prompted him to ask Jordan's doctor questions about how the ruling would affect other people on the waiting list. Would it "reshuffle the deck?" he wondered. It's still not clear.

But Jordan had different questions.

"The press used the term 'end stage cystic fibrosis,'" Peterson said. "His biggest question was about that and when that was going to hit him."

But when she got lungs and was doing well after surgery, Jordan was relieved.

"He was thrilled," Peterson said. "His next words were 'OK, I'm next.'"

Jordan has been on the list since September 2012, and he's had three separate pediatric lung donor offers, but his surgeries didn't happen for different reasons. Once, the weather was so bad his doctors couldn't fly out of state to retrieve the organs. Another time, doctors spotted a contusion on the lungs at the last minute.

As Jordan woke up from the anesthesia after the "dry run" transplant attempts, he would groggily feel for scars on his chest to see whether he had new lungs, Peterson said. The first time Jordan realized there'd been no operation, his father watched as his face fell.

"But our philosophy has been that when that happens, we believe God gave us another day to be together, and we think of the donor family that doesn't have another day," he said. "When you put it in that perspective of what the donor family has gone through, it helps you get your perspective back where it should be."

This week, Jordan said he was feeling all right. He can't play sports like he did when he was younger because an infection damaged his lungs, but he was able to play in a pool on Thursday in the 95-degree Houston heat.

He said he's not afraid of surgery, and he's ready for new lungs "tonight, even right now."

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