When Amy and Doni said “yes” to a meeting with a little girl with heart problems, they had no idea what kind of ride they were in for. They also didn’t know they were about to meet their daughter.
The couple, who began the process to become foster parents in 2018, was contacted in the summer of 2019 about the possible placement of a baby girl in Atlanta, which is almost a three-hour drive from their home in North Georgia. They were told only that she had “some heart issues and would need extra doctor appointments.” In fact, she was born with Hypoplastic Right Heart Syndrome, a serious and rare CHD in which the right side of the heart is underdeveloped. It was unknown then whether the baby would live long enough to meet her foster parents.
Amy and Doni left the day after that fateful call to meet Emmaline at CHOA, armed only with a few onesies and a loose plan to get a hotel room near the hospital afterward. They didn’t even know the name of the baby with “heart problems” they were coming to see.
When they finally entered her room, they took in the sight of a 12-day-old infant with a life-threatening CHD who was all alone in the world.
The patient advocate brought us to our girl and then and there, we instantly became parents,” Amy said. “We saw this tiny, helpless soul hooked up to a million monitors with nobody to love her. Needless to say, we never made it to a hotel that night. One of us has been by her side for every minute since then.”
After four months of many ED visits, inpatient admissions, two cardiac catheters and an open-heart surgery in October 2019 — all while juggling full-time jobs and their lives back in North Georgia — they were finally able to bring Emmaline home for good. Over the course of those months, they learned how to take care of Emmaline’s medical needs and transported her back and forth to CHOA, never knowing if she would be with them for a few weeks or forever. They were not even sure she would survive.
But survive she did, and Amy and Doni adopted Emmaline in April 2020. It was their county’s first-ever adoption by Zoom due to COVID-19.
The couple says Sibley did a fantastic job helping them prepare to care for a medically fragile child. The nurse practitioner for single ventricle patients, Nicole Coolidge, broke down the massive amounts of information they received often from Emmaline’s care team. They were sent home with three-ring binders of information, and the Sibley team was always available to answer their questions at all hours of the day and night.
“A lot of parents come into this situation at least having found out neonatally about their child’s condition,” Amy said. “We had no idea what we were walking into. None. The team at Sibley made sure we were prepared and confident to bring home this tiny fragile infant. It was scary, but we just dove in and adjusted to all the changes that come at you every day.”
“Emmaline will be 2 this year, and she is simply magnificent,” Amy said. “She is truly the light of our lives, and even though our journey was filled with intense uncertainty, all the events that happened led us to where we are today. And for that, we are humbled and thankful. We would not have made it without every person who helped us. She is absolutely astounding, and we could not have asked for a better Emmaline.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.