Name of Program: St. Louis Children’s Hospital Cardiac Neurodevelopmental Program
Year Program Established: 2014
Program Leader: Caroline Lee MD
Key Staff and Specialties:
Cardiology: Caroline Lee MD; Julie Stumpf MSN RN; Mary Jane Broge RN CPNP
Neurology: Christopher Smyser MD MSCI; Sarah Bauer-Huang MD; Rafael Galindo MD PhD; Lindsay Peglar MD
Newborn Medicine: Anna Lijowska MD; Cynthia Ortinau MD MSCI; Patrick Sloan MD; Emily Fishman MD
Therapists (PT/OT/SLP): Rebecca Pendino PT DPT; Caroline Thompson OT; Lindsey Cary MS CCC-SLP
Dietician: Anne Turner MS RD LD
Psychology: Kasey Davis PsyD ABPP; Sarah Girresch-Ward PhD; Gillian Mayersohn PsyD
Neuropsychology: Suzanne Pierson PhD ABPP
Education Liaison: Vicki Baker MS LPC
Age Range of Patients Served:
Infant through school-age
Description of Inpatient Program(s):
Our Inpatient Developmental Care Program is a multi-disciplinary group of therapists, child life specialists, nurses, and advanced practice nurses who provide individualized developmental care for patients 12 months and younger in the Heart Center. Our goal is to support the developmental care needs of the child and family, identify practical ways of implementing appropriate developmental care, and educate bedside nurses and the medical team about how they can support developmental and family-centered care. To accomplish this goal, our team holds weekly developmental care rounds in the cardiac intensive care unit and the cardiac transitional care unit of the Heart Center. All team members participate in rounds in collaboration with families and bedside nurses.
In addition to the above developmental care program, we also have a dedicated Heart Center-Inpatient Neurology Consultation Service that provides a mechanism for identification, comprehensive neurological evaluation and provision of longitudinal care for Heart Center patients. The team includes a core group of pediatric neurologists with specialty training in neonatal neurology and an interest in neurological and neurodevelopmental outcomes of children with congenital heart disease. The team works collaboratively with the cardiac intensive care unit and cardiac transitional care unit to facilitate the use of neuroimaging and other neurology-specific investigational studies, participate in meetings with families, and establish continuity of care for longitudinal follow-up.
Description of Outpatient Program(s):
The Cardiac Neurodevelopmental Clinic (CNDC) at St. Louis Children’s and Washington University Heart Center is a twice-monthly clinic for infants through school-aged children that provides neurologic and developmental screening, evaluation, and coordinated care. The multidisciplinary team consists of pediatric cardiologists, pediatric cardiac advanced practice nurses, neonatologists, pediatric neurologists, pediatric psychologists, a physical therapist, occupational therapist, speech therapist, and dietician. All infants in our Heart Center who have undergone cardiac surgery or have risk factors for neurodevelopmental issues are referred to the CNDC upon hospital discharge. For school-aged children, our program includes a neuropsychologist who provides neuropsychological testing, psychologists who provide patient and family support through consultations and ongoing therapy sessions, and an educational liaison who helps parents advocate for their child and navigate services in the school system.
Description of research or QI projects in cardiac neurodevelopment – undergoing or accomplished:
Our research program, the Cardiac Neurosciences Group, studies brain development in children with congenital heart disease using magnetic resonance imaging. Our previous work focused on understanding the nature, timing, and trajectory of altered brain development in infants and children with congenital heart disease. Recently, we have begun to investigate how these alterations contribute to neurodevelopmental impairment. We are also conducting an ongoing fetal brain magnetic resonance imaging study to understand the physiologic, genetic, environmental, and parenting factors affecting prenatal brain development and subsequent neurodevelopmental outcome after these children are born.
Unique features and strengths of this program:
Our program has several unique features that facilitate continuity of care from the inpatient to outpatient setting. The therapists who participate in weekly developmental care rounds with our inpatient program are the same therapists who care for patients in the CNDC. The extensive involvement of our pediatric neurology team also facilitates continuity. We have a dedicated group of pediatric neurologists who specialize in neonatal neurology and have an additional interest in the neurological and neurodevelopmental outcomes of children with congenital heart disease. Thus, they are an integral part of the neurologic and neurodevelopmental care provided through our inpatient and outpatient programs. Finally, the Perinatal Behavioral Health Services team at Washington University provides dedicated staff and resources to the Heart Center. This team cares for families with a prenatal diagnosis of congenital heart disease, families with children admitted to our cardiac inpatient units, and families in our CNDC. The longitudinal care that the Perinatal Behavioral Health Service provides facilitates continuity of care for parents of children with congenital heart disease.