Sarah Murnaghan goes home to Newtown Square

Sarah Murnaghan, 11, at home with her family in Newtown Square after her second double lung transplant. With her from left are her brothers Sean, 7, and Finn, 5; her sister, Ella, 8; and parents, Janet and Francis.
Sarah Murnaghan, 11, at home with her family in Newtown Square after her second double lung transplant. With her from left are her brothers Sean, 7, and Finn, 5; her sister, Ella, 8; and parents, Janet and Francis. (CLEM MURRAY / Staff Photographer)
Posted: August 29, 2013

It has become a cliché to call critically ill children "fighters."

But there is no better word to describe Sarah Murnaghan, the girl who, with her equally indomitable parents, has battled cystic fibrosis, national lung allocation rules, and the rigors of double lung transplant surgery - twice.

Early Tuesday morning, the 11-year-old left Children's Hospital of Philadelphia after more than six months, and arrived home in Newtown Square about 9:30 a.m., to the glee of her three younger siblings.

Five hours later, Sarah's mother, Janet, carried her and her portable breathing machine out to the front step, then placed her on a yellow velvet armchair.

Sarah, her face bloated from steroids, could not manage a smile, but gamely lifted her right hand and gave a tiny royal wave to reporters and photographers assembled in front of the two-story colonial house.

Around her neck was a medal that said: "For never giving up. We are so proud. Mom and Dad."

"We still have a long journey in front of us. A lot of rehab," said Janet Murnaghan, beside her husband, Francis. "This is the beginning of the next chapter. But we're going to work very hard. We think she's going to grow up, go to college, and have a future. We're certainly not approaching this as if the future is limited."

Until Sarah's muscles and partly paralyzed diaphragm grow stronger, she will remain hooked to the breathing machine. But she was taken off supplemental oxygen last weekend for the first time in more than two years. Her new lungs are showing no sign of rejection and her X-rays are "the best of her life," her parents say.

She faces unending challenges related to the transplants, from the immune suppression that prevents organ rejection to cystic fibrosis, a genetic disease that, while not present in her new lungs, will continue to clog her digestive system with thick mucus.

The disease, plus her medications, have left her young body with problems more common in postmenopausal women, such as osteoporotic spinal fractures.

"Her back is bothering her because of compression fractures," her mother explained as Sarah shifted in the chair, in apparent discomfort.

Ethicists and analysts continue to worry about the precedent set by her family's successful fight to expand children's access to adult donor lungs. But on Tuesday, even critics of that fight wished her well.

"I have strong reservations about efforts to overturn the science-based rules governing the distribution of organs for those Americans in need who are waiting for livers, hearts, kidneys and lungs in order to live," said Arthur Caplan, a prominent bioethicist at New York University Langone Medical Center. "That said, Janet Murnaghan felt that her daughter was not being treated fairly under the existing rules, did as much as she could to give her daughter a better chance, and, ultimately, was successful in helping Sarah go home with new lungs. That degree of determination and pluck has to be acknowledged and admired."

Janet Murnaghan, who formerly worked in public relations, and her husband launched an aggressive media and legal campaign in March to change the so-called Under 12 lung allocation rule.

The rule requires that all wait-listed adults, no matter how sick, be offered adult donor lungs before children under 12 can be considered - even if those children are in dire need. The Murnaghans contended that, because far more adult than pediatric lungs are donated, the policy amounts to age discrimination.

On June 6, a federal judge agreed and ordered that the rule be suspended.

Days later, the group that set national organ transplant policy voted to allow transplant centers to request, on a case-by-case basis, priority status for children under 12 so they can vie for lungs from older donors based on need.

Since then, six children have been granted priority status. One of them subsequently received an adolescent donor's lungs, and two received children's lungs, leaving three still waiting, according to data from the national Organ Procurement and Transplantation Network.

Adult lungs must be cut down to fit children, although studies suggest that does not affect outcomes.

Whatever the size, lungs are far riskier to transplant than other major organs, as Sarah and her family discovered.

Now that she is home, Sarah will have outpatient physical rehabilitation three days a week, a checkup at Children's once a week, and home-schooling to catch up with her fifth-grade peers, her parents said.

As for lung-allocation rules, they plan to continue to fight for a permanent revision of the rules.

"We feel very passionate about the Under 12 rule," Janet said. "Organs should be matched with the sickest person and best match."


>Inquirer.com

For additional coverage, including video and photos, go to www.inquirer.com/sarah


Contact Marie McCullough at 215-854-2720 or mmccullough@phillynews.com.

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