The day Lara and Greg held their daughter Hope in their arms, the Tillmans knew their family was complete.
In addition to Down syndrome, Hope was born with a heart defect called a complete atrioventricular canal. In other words, Hope’s heart had a large abnormal opening between the upper and lower chambers and an abnormal single heart inlet valve where normally two separate inlet valves exist. She would need open-heart surgery.
During the first few weeks of her life, Hope had trouble gaining weight. Lara drove Hope to Arkansas Children’s Hospital (ACH) where Hope’s cardiologist, Dr. Eudice Fontenot, quickly realized the baby was exhibiting signs of heart failure. Hope was admitted to the hospital for treatment. Two weeks later, Dr. Brian Reemtsen, chief cardiothoracic surgeon, performed the eight-hour surgery to repair her tiny heart.
“It is hard to see your baby hooked up to machines and tubes with a long incision down her sternum,” says Lara. “Gratefully, she opened her eyes the very next day.” Hope had a nine-day recovery in the intensive care unit and was finally able to return home.
The Tillmans are grateful for the family-centered care they received along the way. “The ACH Child Life and Education Department explained the surgery to our daughter Anya, who was 12 at the time,” explains Lara. “We were grateful for that level of family support. Their help allowed Anya to be prepared to see her baby sister after surgery.”
With the opening of Arkansas Children’s Northwest in 2018, Hope now receives care close to home.
“At ACNW, Hope visits Dr. Fontenot for cardiology and Dr. Charles Bower for ENT (ear, nose and throat), and even had eye surgery with Dr. Sharon Napier,” explains Lara. “We are so grateful to have a pediatric care team in our backyard.”
Hope is now a thriving 3-year-old. She loves music and her dog Max, and begins pre-kindergarten this year.
Because of generous donors like you, Hope received expert pediatric care at Arkansas Children’s Hospital.
