Educational Support Helps Carter Thrive After Heart Transplant

Children with congenital heart disease need more than expert cardiology care. They also need support to address unique neurodevelopmental challenges so that they can thrive in the classroom and at home.  

Carter was diagnosed with dilated cardiomyopathy as baby. Lurie Children’s NICU-Cardiac Neurodevelopmental Program (NCNP) has provided the educational support he needs to thrive at school. The NCNP serves children with congenital heart disease to address learning difficulties, motor skill problems and behavioral or emotional challenges that may appear after children undergo invasive procedures.  

As a young child, Carter began receiving care at Lurie Children’s Heart Center, and he was waitlisted for a heart transplant. There, a team of specialists from the (NCNP) Early Childhood Clinic were ready to address his unique medical and developmental needs.  

While Carter prepared to begin attending school, his mother Ashley felt nervous about keeping him healthy while he waited for a heart, as well as ensuring his developmental delays could be addressed in class.  

That’s when NCNP’s support became especially invaluable, Ashley said. 

“Carter’s school district didn’t have much experience with kids who were as sick as he has,” Ashley said. “Sarah Johnson (Senior Education Liaison for NCNP) advocated for my son as if he was hers. For the last two years, she has moved mountains to set up an individualized education program (IEP) for him. She helped me loosen up my anxiety about sending him to school.”  

This spring, Carter received a new heart and made a strong recovery, thanks in part to NCNP’s multidisciplinary care. This year, he will begin third grade at a new school with the NCNP team’s support behind him. 

“This has been a journey,” Ashley said. “I’m happy to have people who have dealt with this before. I know every child’s journey is different, but Carter’s was a bit unique.” 

Find out more about Lurie Children's NICU-Cardiac Neurodevelopmental Program (NCNP)