A 5-and-a-half-year-old girl’s shrieks of laughter carry across the street, and her mom looks out the window to watch the girl and her neighborhood friends enjoy riding their bikes and scooters in the warm afternoon weather. It’s a typical, happy scene, and it’s also a profound reminder of how far this little girl – Cora, who was born with a single ventricle congenital heart defect – has come.
“Cora is a great example of our program’s capabilities,” said pediatric heart surgeon Lucas Collazo, MD, Director of Operations for the Inova Children’s Heart Center and Director of Inova’s Adult Congenital Heart Disease Program. “Our approach to caring for these children is multidisciplinary. We work closely with the family – from prenatal diagnosis through all stages of surgery to close outpatient follow-up care. At every stage, she received excellent care from the entire heart center team.”
After a fetal ultrasound detected the heart defect, Cora’s parents came to Inova’s Fetal Care Center for counseling. The team determined that Cora would need staged surgeries to rebuild her heart and ensure it functions with only one pumping chamber.
When Cora was born, the team was ready to get her through the critical first 24 hours. She was transferred to the pediatric cardiac ICU (PCICU), where the heart center team reviewed her images and determined one of her heart’s valves was not closing all the way. This made her case more complex. The heart center team collaborated with the respiratory therapy, PCICU, nutrition, neonatal ICU (NICU) and pediatric anesthesiology teams to develop a customized treatment plan.
After successful surgery, Cora was able to go home, where she was closely followed by Inova’s high-risk single ventricle clinic. She returned for her second-stage operation at 4 months and a third procedure at age 2.
Today, Cora is a thriving, active, smart, and witty girl who brings her family much joy. She sees her pediatric cardiologist at Inova Children’s Cardiology every six months. She chases her older brother and peers on the playground, keeps pace on the baseball field, and is excelling in kindergarten both academically and socially.
Her family credits their faith and their church community for giving them the support they needed as Cora recovered from her staged surgeries and progressed along her journey.
Inova’s team engages with the family of each congenital heart patient from the moment they walk through the doors, giving families the resources they need to meet these complex medical challenges. The team starts planning before the babies are born, and specialized patient navigators are available to help at any time. Inova is one of only a handful of programs that offers a seamless connection between fetal diagnosis, pediatric and adult care, which is important for patients with complex congenital heart differences like Cora’s.
Inova’s multidisciplinary approach made a real impact on Cora and her family. “The high level of specialized care from each department felt like a seamless team that genuinely cared for not just Cora, but our whole family,” said Jennifer, Cora’s mom. “Each specialty having specific experience and expertise for children with heart differences gave us confidence, and it has shaped our expectations for what compassionate, coordinated care looks like.”
In addition to the healthcare team itself, Jennifer noted how much the child life team helped Cora and the family through each surgery. Behavioral health resources also helped the family cope with the stress of caring for a child with medically complex needs.
From big things, like subspecialized expertise in pediatric congenital heart surgery, to little gestures of caring, the whole team was there for the family. “Things like nurses bringing us warm blankets while we slept in the PCICU, muting monitors at night while we slept, asking us about our son and things outside of the PCICU – there are so many of those small moments that made such a difference,” Jennifer recalled.
Early on, while discussing one of Cora’s upcoming surgeries, Dr. Collazo shared his hope for Cora: that she could play with kids in the neighborhood, and no one would even know about her heart difference. “When he spoke those words, they gave us so much hope,” Jennifer said. “It felt like that moment came full circle this summer, when I glanced out the window and saw her going full steam on her scooter, chasing her friends on their bikes. That was when it hit me: we were living in the days we had hoped for.”
Everyone on the Inova Children’s Heart Center team is passionate about delivering hope: helping children with heart differences live vibrant and healthy lives – just like Cora.
To learn more about Inova’s pediatric and congenital heart care, or to schedule appointments, consultations or testing:
Visit InovaChildrens.org/Heart to explore resources, meet the team and learn how Inova can support children with complex heart conditions.
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