PALO ALTO, Calif. — Without warning, Katie Grace Groebner kicked up her right foot and bolted down the white, bright hallway back to her exam room. Just before she got to the door, she slowed to a walk, a smile twitching on her lips.
Though it was but a few feet, a sprint she has rarely before been able to do perfectly punctuates the 12-year-old’s recovery.
“Good. I feel good,” she said in her quiet, wispy voice.
Two months ago, Katie Grace was lying in a hospital bed, painfully fighting for each breath as she waited for new lungs and a new heart.
In June, she became one of fewer than 10 U.S. pediatric patients a year to receive a heart-lung transplant. Her surgery took place at Lucile Packard Children’s Hospital Stanford, one of 34 facilities in the country that perform such transplants on children, according to the United Network for Organ Sharing.
“She’s a completely different kid from when I saw her a month ago,” said Dr. Jeffrey Feinstein, Katie Grace’s transplant surgeon. “She’s pink where she once was gray, she has energy when she once was tired. I can only imagine what she must feel like being able to breathe again.”
Since her birth in Minnesota, Katie Grace suffered from idiopathic pulmonary arterial hypertension, which causes increased blood pressure in the pulmonary arteries and in the right side of the heart. It can cause heart failure if left untreated.
The first clue that something was wrong came when she was a baby and started having fainting spells. Her mom, Kathy Groebner, pleaded with doctors to check her daughter’s heart. But Groebner said they insisted the baby might have asthma or was stubborn because she had a hard time breast-feeding. By the time Katie Grace was 5 and a clear diagnosis was made, the news was the worst imaginable: They were told their daughter wouldn’t live to the end of that year, even with treatment. Her only hope was to have a heart and lung transplant.
“I was in shock,” her mother recalled. “I just wanted to see my daughter and hold her. I wanted to forget I heard it.”
Instead, she and her husband took action to find the best treatment facility for Katie Grace.
“I got on the computer, and I started making calls,” she said.
Groebner said they found the right hospital at Lucile Packard, where consultants explained their services without pressuring them, respecting that she and her husband were the only people who could determine what was best for their daughter.
So the Groebners — Katie Grace, her mother, father and three sisters — sold their home and moved to Clayton in 2008. With treatment, including a multimedication routine, Katie Grace’s health improved. The color came back to her face, and she was able to go to school and play with her American Girl doll, named Katie.
She could swim in a drysuit — she’s a fan of water parks — and sing along to The Jonas Brothers, her favorite band. But by 2013, though, her condition worsened. Katie Grace could hardly stand, let alone walk a few feet, without becoming exhausted.
“All the things she was able to do became that much harder,” Groebner said. “She couldn’t swim because it would exhaust her just to put her suit on.”
That’s when doctors knew it was time for a transplant.
“We try to avoid transplants if possible,” Feinstein said. “If you look at the survival numbers of pediatric patients with transplants, only about 50 percent are still doing well or are alive five years later.”
Six months after being put on the waitlist for a transplant, Katie Grace underwent the 12-hour surgery, putting her in rare company: only 94 children ages 11 to 17 have had heart-lung transplants in the United States, the United Network for Organ Sharing reports.
The procedure left a long pink scar down her sternum, and she’ll have to live in an approved hotel room near the hospital with her mother for at least another month. Doctors then will determine whether it is safe enough and she is strong enough to go home.
But her fight won’t end there. Along with taking more than a dozen medications, Katie Grace must find ways to strengthen her lungs, like blowing up balloons. And she’ll be on at least three medications, including a medicinal steroid, for the rest of her life.
As her main post-op doctor, Dr. Carol Conrad, notes, having a transplant doesn’t mean the 12-year-old is cured.
“A lot of people come into the clinic thinking they are going to be cured, and it takes a long time for people to understand they’re not,” Conrad said.
There is no cure for Katie Grace’s condition, and she can’t have another transplant. Even the slightest cold can be deadly. So little is known about what treatments work in children, her doctors watch her reactions to medications and therapy in her transplant recovery to figure out what might help others.
But for now, she has what she needs to fight her illness. At a birthday party with friends last week at the American Girl doll store in Palo Alto, Katie Grace blew out all her candles in one breath, something she has never done before.
“For us, it means we have another chance to be with her,” Groebner said. “She gets to have a longer life, graduate high school. We actually get to see her spend the night at a friend’s house. All these things, she’s never been able to do until now.”
What is Katie Grace most excited about?
“Swimming without the suit,” she told her mother before pausing and adding, “And climbing. And taking a bath. And running.”