Sarah deserved this chance

FAMILY PHOTO Sarah Murnaghan (with her father, Fran, and mother, Janet, in May) received two sets of lungs and now has pneumonia. That doesn't mean she should never have been treated.
FAMILY PHOTO Sarah Murnaghan (with her father, Fran, and mother, Janet, in May) received two sets of lungs and now has pneumonia. That doesn't mean she should never have been treated.
Posted: July 11, 2013

THIS WEEK comes word that Sarah Murnaghan has pneumonia in her right lung - a condition that her mother, Janet, has described as "definitely a large setback."

Predictably, the online naysayers who comment on our stories are using the news as further evidence that the 10-year-old cystic fibrosis patient never should have undergone transplant surgery that allowed donated adult-size lungs to be surgically altered to fit inside her child-size chest.

"Sad though it may be to hear, there's a reason that pediatric patients aren't routinely transplanted with adult lungs: the outcomes tend to be sub-optimal," wrote phillygwm. "There are adults who Sarah jumped ahead of and, while there are no certainties, chances are they would have accepted adult lungs with fewer complications. It's lose-lose here."

The controversy, of course, started when Sarah's parents campaigned for a change in organ-donation laws to allow their daughter to be placed on the adult-organ waiting list, since so few child-size lungs become available.

As a result, a federal court deemed that Sarah should be placed on the grownup list. The ruling alarmed Harvard medical-ethics expert Daniel Wikler, who told Politico.com, "If the distribution of organs becomes subject to the success of individual publicity campaigns, with organs going to those who hire the best PR firms and lawyers, who on the waiting list would remain confident that their priority would be decided on the merits?"

Worried editorial writers also chimed in. Sandy Hingston, who blogs for Philadelphia magazine's Philly Post, penned an essay called "Maybe Sarah Murnaghan Shouldn't Get a Lung Transplant." The Chicago Tribune's editorial board argued: "This case should not set a legal precedent. Organ transplants, whether for children or adults, are governed by complex rules that take into account death rates among people waiting for lungs and the survival rates after transplantation."

The naysayers no doubt felt vindicated, though sadly, when Sarah's June 12 lung transplant at Children's Hospital of Philadelphia failed. She underwent a second transplant three days later. And now, of course, we have the "large setback" of her pneumonia.

It is not good news. But I'm sorry. Sarah deserved both sets of lungs.

She was sicker than all of the adults on the waiting list, for both of her transplants. During the 18 months she needed a transplant, dozens of less-sick adults got lungs. And let's not forget that lung transplantation is dangerous for adults, too: According to the Lung Transplant Foundation, the national three-year survival rate for lung recipients is only 67 percent.

So it's not as if Sarah's transplants stole a sure bet from grownups in need of one. Every case is dire.

Still, it's true that children do not fare as well as adults after lung transplants. But part of the reason is that, because the surgery in children is so rare, there is a smaller body of knowledge about the procedure in children than there is about the procedure in adults. So there are fewer surgeries to learn from, fewer outcomes to inform researchers about what to try for the next post-transplant kid, fewer chances to improve the overall prognosis for children.

So guess what? If you want to improve the odds of children surviving lung transplantation, the best way to do it is to give them lung transplants. Each surgery contributes to the knowledge that will help the next kid survive. The improvement might not happen overnight, but it will happen over time.

Just look at how the odds have changed for survival of childhood leukemia.

Fifty years ago, no child survived the blood cancer. I guess pediatricians could have used that miserable fact as a reason not to treat sick kids. Thankfully, cancer researchers like Dr. Audrey Evans treated them anyway, and over subsequent decades developed new drugs, radiation methods, therapy combinations and protocols, each one informed by prior results.

"Some of them didn't work but some of them did, and that bought us some time to try new drugs together, and then that bought us more time," says Evans, a retired and much revered former CHOP oncologist and pioneer in pediatric-cancer research. "Hard, continuous work suggested what to do next for children. Today, kids with leukemia are living and growing up."

I'll say. According to the American Cancer Society, children with the most common type of childhood cancer - acute lymphoblastic leukemia - have a survival rate greater than 90 percent.

Lung transplantation hasn't had the same success. But it's important to note that, back in 1963, the first patient ever to receive a lung transplant survived just 18 days. So today's three-year survival rate of only 67 percent is its own kind of miracle.

Obviously, the biggest lesson here is that the need for more organs is critical. As of yesterday, 118,677 people were waiting for a transplant. So instead of sniping that parents of kids like Sarah should pipe down and wait until all the adults have gotten the organs they need, I wish the naysayers would sign up to become organ donors themselves.

As for the argument that Sarah didn't deserve a second set of lungs, here's an enlightening tidbit from the Organ Procurement and Transplantation Network: Of the 28,051 transplants performed in the United States last year, 5,164 of them were repeat procedures - and 97 of those were for new lungs.

I bet they were all adults.

So I have a question for those who snipe that it was political pressure and media hype that got Sarah into the OR for another go-round: What special levers did last year's 97 repeat lung recipients pull?

When you find out, give me a ring. I'm dying to know.

DN Members Only : Approval of Holmesburg methadone clinic is again appealed.


Email: polaner@phillynews.com

Phone: 215-854-2217

On Twitter: @RonniePhilly

Blog: ph.ly/RonnieBlog

Columns: ph.ly/Ronnie

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