“We’re not equipped to care for your child should the need arise.”
For Indira Palislamovic-Nukicic, that declaration by cardiologists in Sioux Falls, South Dakota, was stunning. Her daughter, Ariyana, then 7 years old, was born with hypoplastic left heart syndrome (HLHS), a defect characterized by a severely underdeveloped left side of the heart. The family had previously lived in Fort Worth, Texas, where Ariyana had undergone the series of surgeries that give HLHS patients a 50 percent chance at life: a Stage 1 Norwood procedure, placement of a Glenn shunt, and a Fontan procedure.
“When the Sioux Falls doctors gave me that news, I immediately decided we were not going to sit around and wait,” says Indira. “We needed to find help.”
A trip to St. Louis to visit family and friends provided a solution—the St. Louis Children’s and Washington University Heart Center. Indira visited the Center’s Facebook page and found it filled with positive hospital reviews and stories about successful heart transplants. Another positive factor was that St. Louis has a large Bosnian community, the country from which Indira’s family emigrated in 1996. Indira was convinced that for Ariyana’s sake, the family needed to move to St. Louis.
“Right after we moved, the Heart Center held an HLHS Forum for families to meet the Center’s care team and share experiences,” she says. “It introduced us to a new community that could keep us informed and provide support.”
Now 8 years old, Ariyana is doing well, although her heart function could be better. Her Washington University pediatric cardiologist, Kathleen Simpson, MD, is monitoring Ariyana’s condition; at some point, she may need a pacemaker.
“The Heart Center has doctors who have answers, and that’s what I needed,” says Indira. “To be able to hear from a doctor, ‘This is what we do here,’ is a relief.”
To speak with a member of the Heart Center team, call Children’s Direct at 800.678.HELP (4357).