Your Visit | Overview
What happens during a visit?
The Cardiac Neurodevelopmental Program offers many services that are designed to meet your child’s evolving needs as they develop. At each visit, a clinician considers your child’s developmental progress; talks with you and your child about goals, questions, and concerns; and makes recommendations. Visits are offered in both inpatient and outpatient settings, and include assessments, consultations, therapy, and educational services.
Inpatient developmental assessments
All babies with complex heart disease are offered an inpatient developmental evaluation before they are discharged from Boston Children’s. Our inpatient clinicians are able to identify your baby’s strengths and areas of growth, connect you to both inpatient and outpatient services, and prepare individualized development plans.
Sometimes questions about a child’s development can arise during an inpatient stay, especially when a child has not been previously or recently evaluated. Sometimes, one of our clinicians is able to offer a consultation with a family at the bedside, identify concerns, connect to inpatient resources, and make a plan for further developmental evaluation and treatment upon discharge.
Your intake visit
If your child is new to our program or hasn’t been in touch with the program for several years, they will start with a 90-minute intake visit so that our clinicians can understand your child’s current needs. During the visit, a clinician will meet with you and your child to better understand:
- how your child thinks, reasons, and remembers
- how your child learns and achieves at school
- your child’s social functioning and emotional well-being
- how your child’s brain and nervous system work
- your child’s attention and behavior
If a clinician notices your child is having difficulties, they will connect your family with services, information, and strategies to help. Many patients are scheduled for an evaluation after their intake visit.
Evaluation and assessment
Before your child celebrates their first birthday, they will usually undergo a neurological evaluation to measure their development with a congenital heart disease (CHD) diagnosis. At this appointment, a clinician will see how well your baby is meeting early developmental milestones and how they are able to move their body. After this first visit, you and your clinician can schedule a neurological follow-up, as needed.
CNP offers neuropsychological evaluation to young people with heart disease from birth through age 24. Along with the American Heart Association and the American Academy of Pediatrics, we recommend that all children with complex heart disease undergo an evaluation at least before transitioning to each level of school: kindergarten, middle school, and high school, with additional evaluations as needed.
Through these evaluations, we can monitor a child’s development, capitalize on their strengths, and identify challenges as they emerge. Our evaluators will meet with your family before each assessment to discuss your child’s development and address any questions or concerns. Testing is administered usually within a single morning or afternoon session in an exam room at the hospital.
After each evaluation, clinicians will meet with the family for a feedback session. They review findings, discuss diagnoses, and make recommendations to support your child’s developmental goals. Clinicians often refer families to community resources, and they may coordinate with your family’s schools, therapists, and other providers to help your child receive the care they need. You will receive a full written report after each assessment, which summarizes the testing and conclusions, and lists clear and practical recommendations.
Education evaluations are available to your family if you would like more information about your child’s learning profile and learning needs. During an education evaluation, a clinician will talk to you and your child about your questions and concerns, and will review any previous testing or school records. Then, the evaluator will administer a selection of tests that were chosen to answer your specific questions. Testing appointments are usually scheduled for two hours in our 2 Brookline Place office. About a week after your testing appointment, you will meet with the clinician for a one-hour feedback visit, at which you can discuss the findings and recommendations. Shortly after this visit, the clinician will provide you with a full report, which you may share with your school.
While academic testing cannot be billed to insurance, it can sometimes be covered by a school district, and financial assistance is available for families who qualify.
Therapy and support
Prenatal stress reduction
Receiving a prenatal CHD diagnosis can be challenging. From the moment you learn the diagnosis, we offer prenatal support and anxiety management. Parents expecting a child with congenital heart disease can meet virtually or in-person with one of our clinicians to discuss their hopes and concerns. The clinician will design and offer an individualized treatment plan to help manage parental stress. We want to support our patients’ families as early as possible in order to offer these children the best possible starts in life.
Short-term individual therapy
Some patients are able to receive short-term therapy provided by our program’s clinical psychologists to address concerns such as anxiety, depression, PTSD, and cognitive rigidity. While we wish we could directly serve all patients, therapy is available to only patients residing in Massachusetts and slots are limited. Most patients will be referred to appropriate community providers.
We offer regular psychoeducational therapy groups for parents of teens and young adults with CHD. These groups meet weekly over telehealth and are co-led by a psychologist and an educator. Topics in these groups include anxiety management, promoting executive function, and learning the skills of adulthood.
Teen therapeutic groups
Our psychologists offer weekly psychoeducational therapy groups over telehealth to teens and young adults with CHD. These groups develop connections and social skills, and teach young people about topics such as developing independent adult skills, promoting executive function, and reducing anxiety.
Our psychologists are available for consultations to address specific concerns and to follow up on children’s progress. During consult visits, clinicians can help families about issues such as behavior, anxiety, social skills, learning, emotion regulation, or attention.
Families can schedule a consultation with our educator to discuss concerns or questions around schools and learning. Educational consultations can include reviewing an IEP or 504 Plan, discussing the fitness of different educational placements or programs, examining outside testing or records to understand a child’s profile, or addressing learning challenges that have emerged since a previous evaluation. Educational consultations are not billed to insurance and are usually paid by the family. Some families can qualify for financial assistance.
Our staff in neurology are able to meet with CNP patients to address concerns related to brain function, body movement, attention, and medication. Based on what each family requires, neurology clinicians may order or interpret diagnostic tests, refer patients for treatments or services, or offer medications. Our neurologists are able to manage the medication of some of our patients, including many who have diagnosed attention deficits.
Hearts in the Classroom school trainings
Through a generous philanthropic grant, our program offers to school districts, free of charge, trainings that focus on congenital heart disease, its effects on learning and development, and classroom strategies for supporting learners with heart disease. If your child has a complex heart disease diagnosis, your family is eligible to request Hearts in the Classroom trainings in your child’s school.
Families who want more information about their child’s school experience can request a classroom observation. During an observation, a CNP clinician will visit your child's school for two hours and note how the child is interacting with others and engaging in instruction. After the observation, you and your clinician will meet for a one-hour feedback session to review findings and discuss recommendations. The clinician will then provide you with a report. Classroom observations are not billed to insurance and are paid for by the family. Some families can qualify for financial assistance.
School meeting participation
Our clinicians are sometimes able to meet with school staff or join a child’s IEP or 504 Plan meeting. During these meetings, the clinician’s role is to help the school to understand the child’s profile and their needs as a learner. Our clinicians are not able to act as educational advocates. Psychologists are able to bill insurance for school meetings, while educators must bill families. Some families qualify for financial assistance.