Katja De Groot, 9, poses with her hands in a heart position. As of July 4, she awaited a partial heart transplant to be done by the doctors at Duke University’s medical center.
courtesy photo
MALTBY —Nine-year-old Katja de Groot was born with truncus arteriosus, which is a complex congenital heart defect. After three major open-heart surgeries, she is now preparing for a life-changing partial heart transplant at Duke University in North Carolina.
Katja’s aorta has severely dilated. This partial heart transplant would put live arteries in her heart that would grow with her, as opposed to artificial ones. For most people, it’s a one and done procedure to strengthen their heart.
Despite her family’s efforts in raising money for over three weeks, they came up short until mother Jennifer de Groot took to community Facebook pages The Woodinville Neighbors and Working Moms of Monroe.
“It took off like wildfire. Pretty quickly I got contacts in the local media. They aired Katja’s story and within 24 hours two donors stepped forward,” Jennifer de Groot said. “Just last week, I was in my living room and today we are in North Carolina.”
Jennifer de Groot’s close friend, who also has a daughter with the same condition, introduced her to the idea of partial heart surgery. Within a couple days, she had a Zoom call with Dr Joseph W. Turek at Duke University where he told her Katja is a perfect candidate. They had their bags packed, ready for standby, as soon as they got on the donor list.
Normally one’s heart has two arteries; a pulmonary artery which goes to your lungs to pick up oxygen and an aorta which delivers the oxygen to the rest of your body. With truncus arteriosus, the two main arteries don’t separate, resulting in one large artery coming out of your heart. Because of this one large artery, oxygen that needs to go to the lungs and oxygen that needs to go to the rest of the body get mixed up. This mixed blood then goes to both the lungs and the body, leading to not enough oxygen in the body and too much blood to the lungs.
Being immunocompromised means everything poses a big threat to Katja. Private airfare was the best path to protect her but the flights are anywhere from $28,000 to $50,000, depending on if it’s a fixed charter. The first donor that stepped forward is a billionaire that has chosen to remain anonymous. The family still needed $14,000 but another stranger, John Chontofalsky, covered it.
They flew to North Carolina June 27. “Being here (in North Carolina) waiting for that call is so much better,” Jennifer de Groot said. “That panic feeling, that we have nothing set up for transportation, is gone.”
Jennifer de Groot is overwhelmed by the support from the local community that really made everything come together.
Time is running out for Katja as her condition worsens. As of July 4, her family awaited the call from their doctors for the surgery to take place. They are still in need of a guaranteed private flight home and appreciate any funds donated on their GoFundMe account, www.gofundme.com/f/save-katjas-heart-urgent-flight-for-a-rare-transplant
You can follow Katja de Groot’s heart journey on their blog Confessions of a Mended Heart.
