Name of Program: Boston Children’s Hospital Cardiac Neurodevelopment Program
Year Program Established: 2010
Key Staff and Specialties:
- Cardiology: Jane Newburger MD, Susan Saleeb MD
- Cardiovascular Genetics: Amy Roberts MD
- Cardiovascular Surgery: Aditya Kaza MD
- Neurology: Caitlin Rollins MD
- Psychiatry: David DeMaso MD
- Psychology: Samantha Butler PhD, Brandi Henson PsyD, Anjali Sadhwani PhD, Jayne Singer PhD, Janice Ware PhD, Catherine Clark PhD
- Education: Catherine Ullman-Shade PhD
Age Range of Patients Served: Birth to age 24 years
Description of Inpatient Program(s):
- Infant-Toddler Consult Service (0-3 years): This service provides neurobehavioral assessment and parent consultation for infants and toddlers admitted to the Cardiac Intensive Care Unit (CICU). Infants are routinely evaluated prior to discharge using an integrated approach that combines adaptations of the Newborn Behavioral Observation (NBO) and the Neonatal Behavioral Assessment Scale (NBAS). Findings from the newborn consultation are used to facilitate referrals for outpatient therapies and to provide guidance to families preparing to transition home. Older infants and toddlers are assessed using standardized developmental screening measures.
- School Age Consult Service (4-24 years): The School Age Consult Service is available to cardiac patients ages 4 to 24 admitted to inpatient cardiology. Services are available to support development during hospitalization and after discharge, including consultations to medical teams regarding a patient’s neurodevelopmental profile, consultation to families regarding best approaches to support development during the admission, brief developmental screenings, and collaboration with families to identify next steps for developmental supports after discharge.
Description of Outpatient Program(s):
- Psychodiagnostic Intake Team: The Psychodiagnostic Intake Team serves as the first point of contact for families referred to CNP for further evaluation. Referrals primarily come from the child’s cardiology team at BCH or in community practice, as well as from other disciplines including Neurology, Genetics, or Pediatrics. Psychodiagnostic assessments include extensive parent and child interviews to document relevant history and current concerns, a brief neurodevelopmental screening assessment, and recommendations for ongoing medical management.
- Toddler/Preschool Team (1-5 years): The Toddler/Preschool Team provides comprehensive neurodevelopmental assessments and consultations to young children. Presenting concerns include developmental delays, dysregulated behavior, and frequent requests for evaluation of possible autism spectrum disorders. Assessments are used to inform recommendations for ongoing medical management, including referrals to Early Intervention or Preschool Special Education services and parental guidance around development, feeding, sleep, and behavior regulation. Coordination with outside providers to inform assessment results and treatment recommendations is a key component of the service.
- School-Age Assessment Team (6-24 years): The School-Age Assessment Team provides psychological and neuropsychological assessments of children and adolescents presenting with a wide range of neurodevelopmental and psychosocial challenges. Assessments are completed by a team that includes a clinical psychologist and educational specialist. Evaluation includes assessment of cognitive and adaptive functioning, attention and executive function skills, social communication and reciprocal social interactions, specific learning challenges, and social-emotional functioning. Assessment results are used to guide the development of academic and therapeutic interventions to support ongoing management. Ongoing consultation is available in the school setting to ensure implementation of recommendations and support ongoing care between assessments.
- Transition Team (12-24 years): The Transition Team (launching Winter 2021) serves adolescents and young adults from 12-24 years through tailored psychodiagnostics assessments and ongoing consultation to identify and support medical, educational, vocational, and behavioral health needs during the transition from adolescence to young adulthood. Guardianship evaluations are also completed by the Transition Team when necessary.
- Behavioral Health Treatment Team (1-24 years): CNP’s behavioral health treatment service provides individual and group therapy to children and their families. Referrals for individual therapy and parent guidance often include concerns about anxiety and medical coping, social challenges, and management of attention and self-regulation. A strong emphasis on the use of Cognitive Behavioral Therapy techniques in embedded in our therapy model.
- Academic Testing: We offer in-depth assessment of learning disabilities and the development of an educational recommendations for remediation for children ages 6 and older. The service is conducted by CNP Director of Education, Catherine Ullman Shade, PhD, MEd, and is provided virtually or in person. Pilot experience with the service during COVID identified strong interest among our patients, particularly those who reside in areas in the US and elsewhere who do not have access to specialized special education and learning consultation.
- Educational and Psychological School Consultation Services are provided as adjuncts to the psychological, neuropsychological, and educational assessment services. These services are typically offered to children with particularly challenging medical, behavioral, and/or social-emotional needs whose needs for enhanced intervention are lacking. These services include classroom observations by CNP’s psychology and education staff; development of 504 plans, attendance at IEP meetings, direct consultation to teachers to manage maladaptive behavior. School-based trainings for teachers, school nurses, and administrators through CNP’s Hearts in the Classroom Program and is staffed by CNP’s education and psychology staffs. All school based transitioned to a virtual model in Spring 2020 due to the COVID pandemic and will continue using a virtual format blended with in person services once community schooling is re-established
- The Fontan at Boston (FAB) Clinic opened in October 2020, offering specialized medical and neurodevelopmental follow-up of patients with single ventricle physiology and a history of Fontan circulation. FAB is a multidisciplinary program staffed by the disciplines of cardiology, exercise 6. physiology, gastroenterology, hepatology, psychology (CNP psychology staff), and pulmonology. As the program expands additional disciplines that play a key role in the long-term care for Fontan patients will be added to the clinic staff.
- Harvard Law School / Boston Children’s Cardiac Neurodevelopmental Program collaboration with the Education Law Program at HLS. The collaboration provided educational advocacy for underserved children with a history of stress and trauma (medical and/or social) and learning problems. A second critical goal is to educate law students and BCH medical and psychology fellow in education law. The program connects 3rd year HLS students to CNP families challenged with inadequate educational services. Student lawyers and postdoctoral psychology fellows, working under HLS and CNP leadership provide direct legal services to patients enrolled in CNP and working with a staff and fellow to coordinate comprehensive treatment services.
Description of research or QI projects in cardiac neurodevelopment – undergoing or accomplished:
Externally Funded Research:
- Fetal Brain Development (PI: Caitlin Rollins MD)
- Genomic Basis of Neurodevelopmental and Brain Outcomes in Congenital Heart Disease (PI: Jane Newburger MD MPH)
- CogMed Interventional Trials (PIs, Calderon, Bellinger, Newburger)
- Long-term Outcomes of Children with Hypoplastic Left Heart Syndrome and the Impact of Norwood Shunt Type (SVR III; Newburger, Bellinger)
- The Boston Circulatory Arrest Study (PI, Michelle Gurvitz MD, Co-I’s Bellinger, Newburger)
- A Multi-Institutional Neurocognitive Discovery Study (MINDS) in Adult CHD (PI, Gurvitz)
Multiple QI projects are ongoing involving CNP staff. They largely center on work in the CICU with Dr. Samantha Butler collaborating with the nursing staff on a wide range of topics that focus on Infant Holding, Safe Sleep, Developmental Care Certification, and Gross Motor Development, among other topics. Drs. Samantha Butler and Janice Ware serve on the NPC-QIC Learning and Development Steering Committee that is currently involved in the conduct of the ASQ Study.
Unique features and strengths of this program:
Our program’s greatest strength is the quality and dedication of the multidisciplinary program staff, the majority of whom have worked side by side since 2008 to develop the program. Neurodevelopmental assessment model is multidisciplinary (psychology, education, and neurology)
In addition to the provision of comprehensive neurological and neurodevelopmental evaluation services, our program has worked hard to develop a strong treatment arm of therapeutic intervention for children and parents via online and in-person CBT oriented psychological treatment services, psychoeducation consultation in the schools, and community based pro-social therapeutic recreation such as our therapeutic horseback riding camp. We also are proud of several initiatives with our academic affiliate, Harvard University, that includes a jointly sponsored and very popular BCH/HMS Annual Family Symposium; a newly crafted liaison with Harvard Law School’s Education Law Program to advance our advocacy efforts and to teach and train future health care providers and law students about cardiac neurodevelopment; and a collaboration with PBS/Fred Rogers Foundation to produce psychoeducation material including a book, videos, and a preschool curricula for toddlers and preschoolers featuring Daniel Tiger a character from the popular PBS TV show, Mr. Rogers’ Neighborhood of Make Believe.
In terms of the general program, our services may be somewhat unique in the broad age range that we serve. On the front end we offer the earliest possible care (prenatal and early childhood) and at the upper age ranges (12-24 years) an emphasis on remediation and rehabilitation that prepares our patients to transition to adult services in our affiliated Boston Adult Congenital Heart Program.
In the past several years, CNP staff have integrated into sub-specialty program care including the Heart Failure and Cardiac Transplant Program, Fontan at Boston Clinic, and the Cardiovascular Genetics Program. A new affiliation with the Heterotaxy Program is developing. We look forward to the continued evolution of our multidisciplinary collaboration and integration into the medical setting.