Lesley and Ricardo couldn't wait for their first child to be born. They were in the process of selling their house in Dallas to move closer to family in Houston. Then things got complicated. "We went in for a routine ultrasound, and the doctor told us he couldn't see our baby's heart very well," Lesley says. "We went in for a second scan, which was probably the longest hour of my life. I could just tell something was wrong."
Lesley and Ricardo learned that their baby would be born with hypoplastic left heart syndrome (HLHS), a serious condition where the left side of the heart doesn't develop properly in the womb. Children born with HLHS need three significant heart surgeries before age 5.
"It was so overwhelming to wrap my head around this diagnosis. My brain was racing with diagrams the doctors showed us and what her future might look like. I tried so hard to focus on anything but the open heart surgery that my baby would need at 5-days-old," Lesley says. "We were so grateful that Children's Health℠ handled all the next steps, like scheduling appointments and just telling us when and where to show up."
Compassionate nurses make all the difference
Weeks later, Finley came into Lesley and Ricardo's lives. After only a few precious minutes together, Finley was transferred to the pediatric cardiac intensive care unit at Children's Health. "We were so in love with this little baby that we couldn't help, we couldn't hold," Lesley says. "Ricardo and I leaned on each other and hoped for the best."
Finley's first surgery, the Norwood Procedure, went smoothly. Lesley and Ricardo were especially grateful for the nurses who took care of Finley as she recovered.
"We knew the nurses were highly qualified and would take good care of Finley. But the way they took care of us was an unexpected blessing," Lesley says. "Having to leave our child every night was incredibly stressful. But having a team who knew us and our baby so well made us feel comfortable."
All the while, Lesley and Ricardo were too far along in the process of moving to change their plans. They had sold their house in Dallas, leased it back, then bounced between rentals near Children's Health. When Finley was finally stable enough, they moved to Houston.
Finley's care team at Children's would continue to monitor remotely — and they introduced the family to Clarisa Garcia, M.D., Pediatric Cardiologist and Medical Director at Pediatric Cardiology Associates of Houston, part of the Children's Health Care Network.
Safe at Home, all across Texas
Every day until Finley's second surgery, Lesley and Ricardo shared Finley's weight, blood oxygen levels and other stats with her Children's Health team through the Safe at Home program. This program educates parents and closely monitors babies with conditions like HLHS between their first and second heart surgeries. The program has allowed many families to live at home, rather than stay at the hospital, during the months between surgeries. It has reduced mortality between these surgeries from 17% to between 1.5 and 1.8%.
"The nurses with Safe at Home taught us all the warning signs to look out for. I could text them questions in the middle of the night if I needed to, and they'd get back to me right away," Lesley says. "That gave us so much peace of mind because even though we weren't in Dallas anymore, we were never alone."
Dr. Garcia's compassion and support was evident immediately. She reached out to the family right after Finley's second surgery to see how they were doing and if they had any questions.
"Having a baby undergo heart surgery is incredibly difficult for families, so we do everything we can to walk that path with them," Dr. Garcia says. "We celebrate every win, then keep moving toward the next step."
A happy baby and a hopeful future
Today Finley is a curious baby who takes in everything with wide eyes and close attention. She loves her bouncer and snuggling her two big dogs, Bonnie and Clyde. She won't need her next surgery, the Fontan procedure, until she's about 5 – but she'll have cardiac care teams across Texas cheering for her until that surgery and long after.
"At first, we were devastated by Finley's diagnosis," Lesley says. "But knowing her now, it doesn't scare me at all. She's hitting all her milestones. She's almost sitting on her own. Despite everything, she's just the happiest baby."
The conventional wisdom is that babies with HLHS may not survive childhood and don't generally live past their 30s. But Dr. Garcia envisions a different future – one that Children's Health is helping bring to fruition by providing more capabilities to more children in more places than ever before.
"Our field is evolving, and the programs we offer at Children's Health are on the leading-edge of care," Dr. Garcia says. "We have a Fontan Program with doctors who focus solely on caring for children who've had this procedure. We have a cardiac neurodevelopmental program to help babies meet all of their developmental milestones. And we're using tools like telemedicine to offer these services to families across a broader geographic area. This approach, with specialists who work together and focus on how to give each child the happiest, healthiest life — it's changing everything."
Ranked as one of the best cardiology programs in the country, Children's Health provides expert care for a wide range of heart conditions. Learn more about The Heart Center and the locations we serve.
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