The survival of children with congenital heart disease (CHD) has improved dramatically over the past several decades. With the decreased risk of death, neurologic and developmental problems have become more apparent. As these patients grow into adulthood, these neurodevelopmental concerns can have enormous impact on their future quality of life.
The neurodevelopmental issues can arise from a variety of factors: genetic issues, abnormal blood flow before and after birth, and as side effects from the life-saving surgical and catheter-based procedures these patients undergo.
What type of neurodevelopmental issues are most common?
Compared to the normal population, children with CHD can have lower IQ scores, achievement testing and worse gross and fine motor skills. They tend to have specific problems with executive function and visual-spatial skills.
Ochsner Hospital for Children has developed a Congenital Heart Disease Neurodevelopmental Follow Up Clinic to help identify and treat these specific issues.
Who qualifies for the follow-up?
At Ochsner, any child who had cardiac surgery at less than 1 year of age qualifies for the neurodevelopmental follow-up. This includes high-risk patients such as patients who had single ventricle lesions and lower risk patients who required neonatal heart surgery for lesions other than single ventricle (total anomalous pulmonary venous return or transposition of the great arteries).
Further, any children with CHD who had any of the following: a history of mechanical support (ECMO or VAD), a history of CPR, prematurity (less than 37 weeks of gestation), developmental delay recognized in infancy, genetic abnormality or syndrome, heart transplantation and/or significant abnormalities on neuroimaging.
Finally, any patient who had heart surgery in the first year, but outside the first month of life qualifies.
Infants and toddlers will be evaluated throughout their childhood. Patients considered high risk will be seen at 3, 6, and 9 months and then at 1, 2, 3 years of age, before kindergarten, and fifth and eighth grades.
What happens at the clinic?
These patients will be evaluated by the clinic to ensure that they are developing normally and if not, to diagnose specific neurodevelopmental issues and then make appropriate referrals to physical, occupational and speech therapy. The goal is timely diagnosis and early initiation of therapy to ensure each child’s development is as normal as possible.
More information about the Follow Up Clinic
The Congenital Heart Disease Neurodevelopmental Follow Up Clinic is part of the Michael R. Boh Center for Child Development. Dr. Ted Atkinson is a board-certified developmental pediatrician and runs the clinic. He is assisted by neuropsychologists, physical, speech and occupational therapists. Dr. Diego Lara (pediatric cardiology) is the pediatric cardiology liaison.
For more information about Ochsner’s pediatric cardiology program, visit Ochsner.org/services/pediatric-cardiology.
For the fourth year in a row, Ochsner Hospital for Children has been ranked among the Top 50 Children’s Hospitals in the country for pediatric cardiology and heart surgery by U.S. News and World Report. The U.S. News Best Children’s Hospitals rankings rely on clinical data and on an annual survey of pediatric specialists. The rankings methodology factors in patient outcomes, such as mortality and infection rates, as well as available clinical resources and compliance with best practices. Ochsner Hospital for Children is Louisiana's only ranked children's hospital.
Ochsner Hospital for Children has offered exceptional pediatric care for more than 75 years. Ochsner offers the only pediatric heart and liver transplant program in the state, serving over 76,000 children every year with 140 physicians specializing in more than 30 pediatric specialties and sub-specialties. Ochsner Hospital for Children’s flagship facility is located in New Orleans, with subspecialty clinics across Louisiana and in Mississippi.