Bringing Advanced Congenital Heart Care Closer to Home for Families in Wichita

When Lilly was diagnosed prenatally with hypoplastic left heart syndrome (HLHS), a complex congenital heart defect, her family was referred to the Elizabeth J. Ferrell Fetal Health Center at Children’s Mercy for specialized fetal and cardiac care. Through coordinated prenatal planning and multidisciplinary management, Lilly’s care team prepared for immediate cardiac intervention at birth, ensuring a seamless transition from diagnosis to treatment. 

Now 2 years old, Lilly has successfully undergone the first two stages of surgical palliation for HLHS and continues to receive ongoing care through a close partnership between Children’s Mercy Kansas City and Children’s Mercy Wichita. Her care team includes pediatric cardiologist Rabah Daoud, MD, who provides longitudinal cardiology follow-up in Wichita, allowing much of her routine cardiac monitoring and advanced imaging to occur closer to home. 

The expansion of Children’s Mercy Wichita is helping improve access for regional families managing complex pediatric conditions. With enhanced specialty services, advanced cardiac imaging capabilities and coordinated care pathways, patients like Lilly can receive comprehensive follow-up care locally while still benefiting from the expertise and resources of the Ward Family Heart Center in Kansas City. 

“Lilly has successfully completed the first two stages of her surgical repair and is now awaiting her third,” Dr. Daoud said. “Thanks to the comprehensive cardiac imaging and specialized care now available here in Wichita, she has been able to receive the advanced testing and close follow-up she needs much closer to home.” The ability to identify concerns early, provide timely intervention and reduce the burden of travel has helped support Lilly’s progress and quality of life. 

Lilly’s journey highlights the value of integrated pediatric specialty care, demonstrating how collaboration between regional and tertiary care teams can improve access, continuity and outcomes for children with congenital heart disease throughout the region.