Without knowing how their daughter’s heart journey would test their faith, Lisa and Gary chose her name, Liliana Faith, long before she was born. They say that she has truly lived up to her name by being a determined heart warrior and causing them to fully rely on their faith every step of the way.
Early in Lisa’s pregnancy, doctors saw something unusual in Liliana’s heart. What first looked like mild defects in utero, turned out to be five serious congenital heart defects including coarctation of the aorta (CoA). Within a week of her early birth, she faced open heart surgery and then many other hurdles to overcome. She spent her first two months of life at the Children’s Healthcare of Atlanta Egleston Hospital.
“We had no idea what we were in for,” Lisa said. “I had sort of breezed through my pregnancy not realizing that she’d be in the hospital until March. It was scary at first because we didn’t know anyone going through something like this. The Sibley staff suggested we join some CHD Facebook groups, and it helped to know that we weren’t alone.”
Once they were discharged, it became even more comforting to befriend other heart families in the fight as they learned to take care of their daughter at home. Lisa said the doctors at Sibley Heart Center Cardiology were great about helping them understand what was going on with Liliana’s heart.
“We appreciated the drawings and the explanations that we could then use to explain to our family what was going on,” Lisa said. “I’m grateful that there is someone available 24-7 to answer our questions and concerns.”
Lisa now uses her experience to help other parents who are beginning their heart journeys. She encourages families to ask questions, advocate for their child’s care and to be unafraid to ask for help and resources. She also reminds parents to take care of themselves so they can take care of their child.
“It was the best thing that happened to us that we were sent to Children’s for Liliana’s care,” Lisa said. “We were in the best hands, and we had a great experience there.”
Lisa said that her family’s experience with CHD has made them more outgoing and willing to reach out to other parents to help each other advocate for their kids. They initiate more conversations about medically complex children, and they participate in Kids at Heart events to raise CHD awareness. She says the experience has changed her perspective as a parent.
“There were times we didn’t know if she’d make it out,” Lisa said. “So, we try to never take anything for granted. I enjoy my kids more. I love to see them playing together, and we’re more appreciative of time spent as a family. She is so resilient and determined to do the things she wants to do. I love to see that.”
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.