Recent studies have confirmed the link between medical issues requiring Intensive Care Unit (ICU) treatment and developmental delays in children with congenital heart disease.1,2 The Cardiac Neurodevelopmental Follow-up Clinic at Penn State Children’s Hospital is one of fewer than 20 programs in the country designed to provide both early assessment and early intervention for this population.
Children are typically referred to the Cardiac Neurodevelopmental Follow-up Clinic by pediatric cardiologists or cardiothoracic surgeons, and are monitored at ages associated with significant developmental milestones through childhood and adolescence (6-9 months, 18 months, 24 months, 3 years, 5 years, etc.). Areas monitored include a child’s receptive and expressive language, cognitive development, play skills, adaptive skills and fine and gross motor development. “Our evaluation is based on a combination of screening, rating scales and direct testing,” says Cheryl Tierney, MD, associate professor of pediatrics and section chief, behavior and developmental pediatrics. “This allows us to provide an individualized plan for each patient. Our multidisciplinary team includes a nurse practitioner, cardiology physician assistant, occupational therapist, pediatric neuropsychologist and a feeding specialist who is a speech and language pathologist.”
For example, children with complex congenital heart disease are known to be at much higher risk for feeding difficulties, as is the case for Lily Bagnato, who currently relies on a G-tube for nourishment. Lily was six days old when she had her first cardiac surgery, and stayed in the Pediatric Intensive Care Unit (PICU) for seven weeks post-surgery. At 10 months, Lily’s cardiologist and physician assistant referred her o the clinic.
Early intervention with these children is key.2 Dr. Tierney concludes, “One of the big benefits of a multidisciplinary clinic like ours is that it saves time. By the time a family brings up a concern to their pediatrician and a child is identified as needing extra developmental support, it takes, on average, six to nine months in Pennsylvania for a child to receive a developmental assessment. Once a child is part of our clinic, however, we automatically evaluate him or her at all the stages known to be high-risk. Our goal is to maximize the outcome for every child under our care, and this program fulfills this commitment for children with congenital heart disease.”
Cheryl D. Tierney, MD
Associate Professor of Pediatrics
Section Chief, Behavior and Developmental Pediatrics
CARE PHILOSOPHY: I care for the world’s most vulnerable—children with disabilities. I advocate for them on a patient-to-patient level and also through statewide and national advocacy.
- http://www.nih.gov/news-events/news-releases/link-between-congenital-heart-disease-neurodevelopment-issues-children-found. Accessed April 15, 2016.
- Marino BS, Lipkin PH, Newburger JW, Peacock G, Gerdes J, Gaynor JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management. a scientific statement from the American Heart Association. Circulation. 2012; 126: 1143-1172.
Physicians interested in referring patients to the Cardiac Neurodevelopmental Follow-up Clinic or the Neonatal Intensive Care Unit Follow-up Clinic can call 717-531-8941.