Congenital heart defects – and the surgeries to repair them – can have far-reaching impacts on a child’s development. Children with congenital heart defects can face learning differences, developmental delays, attention difficulties and/or decreased academic achievement. This can affect their social relationships, schoolwork, careers and quality of life. The Heart Center at Children’s Health℠ is working to improve patient quality of life via an innovative cardiac neurodevelopmental program that helps patients with heart problems reach their full potential.

Our program includes one of the nation’s first inpatient cardiac neurodevelopmental programs, two bilingual neuropsychologists and a multidisciplinary approach that helps us match patients with the interventions that are right for them, from birth to adulthood.

“We’re constantly asking: How can we make sure that children go on to have a high quality of life after complex heart surgeries?,” says Corinne Anton, Ph.D., ABPP, who is the Director of the Cardiac Neurodevelopmental Program at Children’s Health and is an Assistant Professor of Psychiatry at UT Southwestern.   

How early intervention improves cardiac neurodevelopmental outcomes

Traditionally, cardiac neurodevelopmental programs have focused on evaluating, monitoring and supporting babies and children after they leave the hospital. While this outpatient support is integral to our care, we’ve also developed an inpatient program that reflects the importance of early intervention and patient-caregiver bonding.

“The brains of children with cardiac defects often mimic the brains of premature infants, and NICUs have produced a plethora of published literature about how creating a nurturing, comforting hospital environment helps pre-term infants grow and develop,” Dr. Anton says. “We used those insights to redefine key aspects of our care.” 

For instance, Dr. Anton and her colleagues developed a rounding process that starts with identifying CVICU patients at highest risk of neurodevelopmental challenges. We educate the parents of those children about neurodevelopment, and empower them to take an active role in their child’s care during hospitalization.

“Parents can feel helpless and disconnected when their baby is medically fragile and hooked up to monitors,” says Anna Jones, APRN, PNP, who leads our inpatient rounding service. “We help them navigate those feelings and facilitate ways for the caregivers to engage with their child.”

For example, our inpatient neurodevelopment team works with each family to identify a goal – ­such as wanting to hold or feed their baby – that will promote bonding and development.

“If the goal is breastfeeding, we ask our speech therapist and our lactation specialist to provide support,” Anna says. “If the goal is holding the baby, we can bring in a physical therapist, occupational therapist and/or a child life specialist to help parents safely accomplish this goal.”

Our team also created a handout that educates families about how they can nurture babies’ development in the hospital, by doing things like reading to them and showing them black-and-white pictures. And we teach parents how to reduce negative stimuli – like bright lights and loud televisions – that can impede sleep and development.

“We want every parent to know how they can give their baby the strongest possible developmental start,” Anna says. 

Outpatient cardiac neurodevelopmental care, from infancy to adulthood

Once patients leave the hospital, they transition into our outpatient program, where our multidisciplinary team will assess, monitor and support them in the coming years. We start by teaching parents ways to promote social-emotional development, and strategies that can help young children achieve appropriate developmental skills and abilities.

We also perform developmental, cognitive and adaptive assessments at key intervals. This establishes a baseline that helps our team detect any concerns as soon as they arise.

“Some of the things we see are slower motor development, slower processing speed and slower visual-motor integration,” says Marsha Siebenmorgan, Ph.D., a neuropsychologist who specializes in heart patients. “When we can identify weaknesses and address them early, we have a much better chance of changing the developmental trajectory and making sure a child is in the strongest possible position to succeed when they start school.”

This pattern of assessment, monitoring and intervention continues all the way to adulthood.

“The data shows that when these kids receive intervention across their early lives, they are more adjusted, more successful and better prepared for future challenges,” Dr. Siebenmorgan says.

Constant evolution and improvement with bilingual services

As the cardiac neurodevelopmental field evolves, our team is pursuing every opportunity to raise the bar on patient care. We have a large bilingual patient population, and therefore we have integrated bilingual providers into our program to conduct patient neurodevelopmental and neuropsychological assessments.  

“We have two bilingual neuropsychologists who speak Spanish and can test in Spanish, which enables us to build stronger relationships and obtain more accurate evaluations than if we were working through interpreters,” Dr. Anton says.

On the research side, our heart center is an active participant in the Cardiac Neurodevelopmental Outcome Collaborative – an international, multicenter effort to collect comprehensive data on individual patients’ medical history, treatment and neurodevelopmental outcomes. This will help pinpoint risk factors and successful interventions.

As we aim to continue to improve patient quality of life over time, our team became the first to integrate routine mental health screening into outpatient visits for heart failure and transplant patients, in partnership with the Center for Depression and Clinical Research at UT Southwestern. Patients age 11 and older complete questionnaires on an iPad, enabling us to quickly evaluate their responses and provide real-time intervention for patients with mental health and adherence concerns.

“We’ve identified a lot of mental health concerns, including suicidal ideation, that parents and our providers weren’t aware of,” Dr. Anton says. “My goal is to expand this screening to all our cardiac clinics, and it’s just one example of how we keep finding ways to provide care that extends far beyond a patient’s heart condition and helps them achieve the best possible quality of life.”

Learn more about the innovative heart care and research at Children’s Health.