Rare heart-lung transplant allows 12-year-old girl to have a second chance at life

“Your daughter won’t live out the year.”

Such are words that a parent would never want to hear. Kathy and John Groebner had to stomach this grim statement when a Minnesota doctor diagnosed their daughter Katie Grace, now 12, with idiopathic pulmonary arterial hypertension, “IPAH,” at only 5 years old. But the spunky lover of swimming and the Jonas Brothers beat the odds of that diagnosis, and received a rare heart-lung transplant in June — thanks to the extraordinary care of Jeffrey Feinstein, MD, and the Heart Center team at Lucile Packard Children’s Hospital Stanford.

Feinstein is an expert at treating IPAH and other forms of pulmonary hypertension; the condition is characterized by high blood pressure in the pulmonary arteries.  This leads to damage of the lung’s blood vessels, and eventually, heart failure – and Katie Grace had many of the disease’s symptoms. Prior to her 2008 diagnosis back in the Midwest, Katie’s life was dominated with decreased energy, breathing difficulties, fainting episodes and faulty diagnoses. Katie Grace’s parents started a nationwide search for the best care.

“We were really frightened because there were no ‘givens,’” Kathy said. “Everything – including medication and treatment at that point, was trial and error.”

Through mom’s reading of Dr. Feinstein’s leadership in the world of pulmonary hypertension, Kathy decided to have Katie Grace treated at Lucile Packard Children’s Hospital Stanford.

Selling their home and almost all of their possessions, the family loaded up their RV and drove from Mankato, Minn., in 2008 to be treated by Dr. Feinstein. Settling in Clayton, Calif., and ensuring that Katie Grace followed a strict medication regimen, Kathy and John hoped that everything would be ok.

Fast forward five years to 2013, and Katie Grace’s health took a turn for the worst. Her fatigue meant she couldn’t walk for three minutes without tiring out. Even laughing became too difficult because of her breathing difficulties. The doctors concluded that despite the maximal medical therapy, Katie Grace was worsening, and a heart and lung transplant was her only option.

Now, with a new heart and lungs from the June 14 transplant surgery led by Katsuhide Maeda, MD, Katie Grace recently hit a milestone of her own – swimming without her dry suit; the suit protected a special intravenous catheter that delivered one of her many prescribed medications.

“Katie Grace is doing very well after her transplant, and that is great news,” Feinstein said. Pulmonologist Carol Conrad, MD, who monitors Katie Grace lung function agrees: “Katie Grace’s pulmonary function is at near normal levels, indicating that she has made excellent recovery so far.”

Kathy and John will be forever grateful for the life-saving gift of organ donation, but also for the extraordinary care that they’ve received at Lucile Packard Children’s Hospital Stanford:

“Had we not moved out here, she wouldn’t have survived the last six years,” Kathy said. “This hospital saved my daughter. We have the prize — she is still alive.”

Discover more about our Heart-Lung Transplant Program or call 650-721-1132.