"When we were first diagnosed, it felt like everything was completely unknown, we didn’t know anyone who had been there, we didn’t even know what hypoplastic left heart syndrome was,” Jean Garcia recalls.
Seven years later, Jean and her family have learned a lot through personal experience and meeting other families. Now, they are using that knowledge to help other families in similar situations.
Jean was initially referred to the SSM Health Cardinal Glennon Fetal Care Institute 22 weeks into her pregnancy, after a detailed Level II ultrasound at Anderson Hospital revealed concerns about her son Charlie’s heart. The Fetal Care Institute’s Fetal Heart Program team confirmed the suspicions; Charlie had a variant of hypoplastic left heart syndrome (HLHS).
The Fetal Heart Program brings together the best cardiothoracic surgery, cardiology, neonatology and maternal-fetal medicine experts in the region to care for mothers and their babies who have a congenital heart defect.
"From that first appointment, we were part of the Glennon family, we knew that Glennon was the right place for our care,” she says. “They were there for us on a personal level, and that is still true today."
Making Connections
Jean fondly recalls one of her early conversations with SLUCare Pediatric Cardiothoracic Surgeon Charles Huddleston, MD, one of the cardiothoracic surgeons that would care for Charlie after he was born.
"In talking with Dr. Huddleston, he asked if we had chosen a name yet, so he could use it when talking about our baby and his care,” she says. “We told him we were leaning toward Charles Andrew. It turns out those two names are the names of the surgeons who have been with Charlie since the start. At that point, we truly knew this where we should be."
Throughout the pregnancy, the Fetal Heart team monitored the well-being of Jean and Charlie and prepared for his arrival. During this time, the Garcias connected with other families who had traveled a similar path.
"From the time we were diagnosed there were so many unknowns, I just wanted to know someone else who had been there,” Jean says. “Barb Kountzman, a cardiothoracic surgery nurse, connected me with another mom whose baby had HLHS."
"It was like a breath of relief when I could talk to another family who had been there and taken the same path with the same team. That connection alleviated a lot of fears. It helped me process through the worry during the pregnancy. And, that mom reminded me, we were having a baby, not a heart defect."
Supporting The Entire Family
At 39 weeks gestation, Jean’s labor was induced at SSM Health St. Mary’s Hospital in St. Louis. It was her son Nathan’s first day of preschool.
"When we learned about Charlie's diagnosis, one of the first things I thought was, our baby’s broken heart is going to break their hearts,” Jean says when explaining how they helped their 3-year-old and 2-year-old cope.
Shortly after they found out about Charlie’s diagnosis, the Garcias found a counselor to help their children process the situation and cope.
"We talked with the boys about how the baby’s heart wasn’t working right, and that the doctors were going to help,” Jean says. “The Child Life team at Cardinal Glennon helped explain the NICU and the care their brother would receive after he was born."
"Throughout all of this, we have been honest with our children. This is scary. It’s okay to have feelings about this. We also try to teach them that there are some things we can control, and some things we can’t.”
Charlie’s Arrival
On the day of Charlie’s delivery, Jean was wheeled into
an operating room in case interventions were needed. When he was born, he was evaluated by the neonatology team, who prepared him for transfer to the SSM Health Cardinal Glennon NICU.
"Throughout the delivery, my husband, Matt, reminded the team that I wanted to hold Charlie before he went to the NICU. After I held him, the nurses stopped and made sure Matt could hold him too. It meant so much to us that they took this time for us to meet Charlie for the first time,” she recalls. The Garcias had a photographer present for the delivery and the unforgettable memories shortly after.
Shortly after delivery, Charlie was taken to Cardinal Glennon’s Level IV NICU for care. Jean’s parents followed and “were our eyes and ears until Matt and I could be with him,” she says. She was discharged 30 hours after delivery, and she and Matt went straight to SSM Health Cardinal Glennon to be with Charlie and have him baptized.
The team at SSM Health Cardinal Glennon did everything they could to help make Charlie’s baptism in the NICU a reality.
"Our family priest, Charlie’s namesake, who has been there for weddings and baptisms for years, flew in to perform the ceremony. The Glennon Pastoral Care team made sure everything from sterilized water to an appropriate white garment for Charlie was ready. They even helped us FaceTime his godfather from New York so he could be there too,” she recalls.
