March 17, 2014 -- Sarah Murnaghan has taken a lot of steps forward in her recovery from the controversial double lung transplants she underwent in June after her family successfully sued to prevent an organ transplant rule from being enforced on her.
But there’s something special about pedaling.
Sarah rode a pink bike down the street with her siblings earlier this month as her mother filmed the milestone and eventually posted the video to Facebook.
“Yes, that’s Sarah down there with Ella and Shawn,” Janet Murnaghan says in the video from behind the camera as her children round a corner and shrink into the distance.
Sarah was born with cystic fibrosis, a genetic condition that affects cells that produce mucus, sweat and digestive fluid. By the time she was 10 years old, she had gone into respiratory failure and needed a lung transplant to survive. But because of her age, she wouldn’t be considered first on the transplant waiting list for adult lungs –- only child lungs -– as part of the series of rules that became nicknamed the “Under 12 Rule.”
The Murnaghans launched a campaign to show the nation that this rule was discriminatory, and eventually won a temporary restraining order against U.S. Health and Human Services Secretary Kathleen Sebelius to prevent her from enforcing it for Sarah. The Organ Procurement and Transplantation Network ultimately voted to keep the Under 12 Rule, but created a mechanism that would allow doctors to request exceptions for their pediatric patients.
After the restraining order, Sarah’s name was placed on the waiting list twice –- once as a 10-year-old and once as a 12-year-old. She got her first lung transplant from an adult donor –- the 11th of its kind since 1987, according to OPTN -- on June 12, but it failed. Then on June 15, she got another transplant from an adult donor that was successful.
More than two months later, Sarah left the Children’s Hospital of Philadelphia, where she’d lived for the past 6 months, and moved back home with her family in Newtown Square, Penn.
At first, Murnaghan kept Sarah in a “bubble” because she was on immunosuppressant drugs to prevent organ rejection, but eventually Sarah’s immune system was allowed to start returning to normal. It was a snow storm that prompted Janet Murnaghan to take Sarah and her siblings to the grocery store –- Sarah’s first outing since returning home.
“Five people came up in the grocery store and said something to her,” Murnaghan said, adding that people always say nice things to Sarah now that she goes on little outings. “She’s 11 years old. She thinks it’s great. She thinks the only good thing that came out of it was that she got to be famous somehow. She doesn’t understand it, but she likes it.”
Sarah has resumed her schooling with a tutor, and her mom tries to encourage her to walk more with special “mommy” activities -- like going to the mall and visiting the family dog that can no longer live at the Murnaghan home.
Sarah had been on a ventilator until a little over a month ago when she “turned a pretty big corner,” Murnaghan said. At first, Sarah was going off the ventilator in 6-hour spurts, but now she doesn’t need it at all during the day, Murnaghan said.
Now that she’s no longer tethered to a machine, Sarah even walks around the house without holding onto her mother.
“All of the sudden, I run around and Sarah’s not where she was,” Murnaghan said with a laugh. "'I'm not using that walker anymore' -- she told me that last week.”
Even though the idea of letting Sarah walk without the walker made Murnaghan nervous, she said she had to respect that Sarah felt ready and ultimately let her do it. Now, Sarah tells her mother that she can finally see that she’ll eventually be a “regular little kid again, running around,” Murnaghan said.
“That’s really cool,” she said.