Friday, Aug 1, 2014 • Updated at 5:35 PM PDT
At Lucile Packard Children’s Hospital Stanford, the word “hero” is a word being tossed around a lot these days, directed at many, different people.
Of course, when the story is about a little girl whose life was just saved by a rare and risky heart-lung transplant, it is one that appears to be totally justified.
12-year-old Katie Grace Groebner, of Clayton, suffers from pulmonary hypertension, or PH (a type of high blood pressure caused by a tightening of the arteries taking blood from the heart to the lungs and resulting in a damaged, and weakened heart).
Pulmonary hypertension is a type of high-blood pressure caused by the tightening of the arteries that carry blood from the heart to the lungs. As a result the heart’s right ventricle becomes overgrown, strained and weak.
Or, at least Katie Grace did suffer from PH until June 14th when she received a new heart and lungs thanks to a team of doctors at the hospital.
In all of the United States last year, fewer than 10 children received such transplants. LPCHS is the only facility on the West Coast capable of performing such an operation.
Katie Grace’s parents, Kathy and John Groebner, understandably think of their daughter’s doctors and nurses as heroes. The doctors, however, say they’ve got it backwards.
“You want to find a hero? Talk about the parents,” says Dr. Jeffrey Feinstein, Director of the Center for Pulmonary Vascular Disease at LPCHS. “If you look at the amount of work that I did, compared to amount of work Katie Grace’s parents did? There’s no comparison.”
Dr. Feinstein is not just referring to the nearly-round-the-clock care and attention Kathy and John have had to devote to Katie Grace since her diagnosis in 2008. He is also referring to the life-upending decisions they have made to put their daughter in the best position to survive.
Katie Grace Groebner was diagnosed with pulmonary hypertension in 2008. On June 14 of this year, she received a heart-lung transplant at Lucile Packard Children’s Hospital Stanford.
Katie Grace was diagnosed with PH while the family was living in Mankato, Minnesota in 2008. Kathy says her daughter had shown signs of a heart condition almost since her birth: trouble breathing, passing out, and developmental delays.
It wasn’t until Katie Grace underwent a surgery to repair a hole in her heart that the true scope of the problem was discovered. The surgeon emerged from the operating room to tell Kathy that the hole was not repairable, Katie Grace had PH, and, as Kathy recalls, “that she would die within a year.”
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Kathy, unwilling to accept that prognosis, began researching PH. She discovered just three doctors in the country that she considered to be experts in PH. One of them was Dr. Feinstein. Within just a few months Kathy and John put their home on the market, sold most of their belongings and moved to the Bay Area, living for a time in their RV.
After Katie Grace’s diagnosis, Kathy and John Groebner sold their belongings, and drove in an RV from Minnesota to the Bay Area in order to be close to Dr. Jeffrey Feinstein, an expert in treating pulmonary hypertension
“There was no other decision to be made,” Kathy says.
It was also a decision the Groebners are glad they made, one they believe has saved their daughter’s life.
A daughter, by the way, that the Groebner’s call “their hero.”