Amanda and Armando Morales were ecstatic when they discovered they were expecting a baby in 2006. Yet the ultrasound they had when Amanda was 18 weeks pregnant squelched their joy and replaced it with worry. “We were told if we even made it to term, the baby wouldn’t live long,” Amanda recalls.
The ultrasound showed the baby had Hypoplastic Left Heart Syndrome, or HLHS. With this severe congenital condition, parts of the left side of the heart don’t completely develop. Without early treatment, babies born with this condition usually die within a few weeks.
“We were devastated but kept going,” Amanda says. “I had faith in whatever was meant to happen.”
Amanda delivered her baby, Asher, four weeks early. Weighing just 4 pounds, 7 ounces, he was quickly transferred to St. Louis Children’s Hospital.
Babies born with HLHS may have a three-stage reconstructive surgery and/or need a heart transplant. Asher wasn’t a candidate for the staged surgery so he was put on a heart transplant waiting list soon after birth. The clock began ticking.
While waiting for transplant, Asher grew steadily weaker. “The transplant coordinators would stop in Asher’s room daily to check on him and chat with me,” Amanda says. “We were down to the wire and I didn’t know if Asher would get a transplant in time or not.”
Forty days after Asher’s birth, on a rainy spring night, the call came: A heart was available. The family said a prayer for the baby girl who had died and would give renewed life to Asher. Then they quickly headed for St. Louis Children’s Hospital for a heart transplant.
“It was miraculous,” Amanda says. “Immediately after the heart transplant, we noticed the difference in Asher. He went from pale and cold to pink and warm.”
As a nurse, Amanda was diligent about Asher’s care. Yet she felt fully confident in the transplant team and staff in the Pediatric Intensive Care Unit. “Everyone was so compassionate and family oriented,” she says. “They made sure we had as much quality time with Asher as possible. I knew he was in good hands. They always treated Asher like he was special, not a number.”
Asher went home a week after transplant. Amanda says it’s comforting knowing St. Louis Children’s Hospital will always be there for her family. “The team’s care didn’t just end at transplant. They always take time for me when I call and ask questions. They put me at ease and make me feel less scared about the future for Asher.”
Today, at age 5, Asher is part of a big, bustling family that includes a 14-year-old brother and 3-year-old triplet siblings who were born on his second birthday. Asher hasn’t had any rejection issues from the transplant and continues to thrive. His current fascination is with balloons. Each time Asher visits St. Louis Children’s Hospital he stops by the gift shop to buy a balloon. And he always checks the hospital’s atrium ceiling for any wayward balloons he might be able to retrieve.
“We’re so thankful for the mother who chose to give life through her baby’s heart donation,” Amanda says. “We never considered being organ donors before but now my whole family plans to be donors. We’re grateful for every day and cherish every moment."
