Like most mothers of newborns, Danae Miller of Elkhart spent the first several months changing diapers, giving baths, feeding, rocking, and playing with her baby. But, unlike most families, their daily routine took place 150 miles south of their hometown, in a private room inside Riley Hospital’s new Simon Family Tower. “This is just so nice,” Danae said while rocking Skylar. “It doesn’t even feel like being in a hospital.”
Her daughter, Skylar, has been full of surprises since her first day of life. She was born seven weeks prematurely, weighing 4 pounds, 6 ounces. Danae and her husband Erik quickly discovered Skylar had a bigger complication than prematurity. Her heart had a hole called a ventricular septal defect (VSD) that would need to be repaired, and an arch that wasn’t attached as it should be. Skylar was flown by Lifeline helicopter to Riley Hospital for surgery to correct the arch. It was a terrifying time for the new parents, but Danae says she and Erik were comforted by the compassion and expertise of their medical team. “The doctors explained everything to us,” she recalls. “They made us feel like they had all the time in the world to talk to us about it.”
Riley heart surgeon John Brown, M.D., operated immediately on Skylar’s tiny heart to connect her arch. She needed more surgery soon afterwards because the blood flow still wasn’t strong enough to supply her abdominal organs. Dr. Alan Ladd performed emergency abdominal surgery to remove some damaged sections of intestine. Then, Dr. Mark Hoyer placed a stent in the arch of Skylar’s heart to improve blood flow. Just before Christmas 2013, when Skylar was strong enough for her final open heart procedure. Dr. Brown closed the hole in her heart.
Doctors at Riley also discovered Skylar had a small cleft in her palate. Genetic testing revealed that her medical issues were part of a condition called DiGeorge Syndrome. Along every twist and turn of their Riley journey, Danae says she has been comforted by the dedication of their care team. “They make you feel almost like it’s their baby too. It puts me at ease because I know they are watching out for her.”
She’s also grateful for the comfortable, private room in the new Riley Newborn Intensive Care Unit (NICU) that allows her to spend every waking moment taking care of her daughter.
“I didn’t fully understand what a great place Riley was until we were here,” Danae says with a trembling voice. “It’s important for people to know how much of a difference they’re making by donating to Riley—not just for these little kids, but for their families.”