Cardiac Neurodevelopmental Outcome Program Contact number | 202-476-6867

Research

Protecting the Prenatal Brain

We have an NIH study to identify innovative methods to detect, and someday prevent, prenatal brain injury caused by congenital heart disease.

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At Children’s National Heart Institute, we focus on cardiac care, but our goal is a healthy, thriving whole child. We focus on how your child’s heart condition and treatments affect his or her overall health and development, especially cognitive growth.

Our Cardiac Neurodevelopment Outcome (CANDO) Program is the region’s only program designed specifically to monitor neurodevelopmental growth in children born with congenital heart disease.

The Heart-Brain Connection

Extensive research has demonstrated that children with congenital heart disease (CHD) who are born blue or who need cardiac surgery in their first year of life are at risk for developmental and/or learning difficulties.

Even if early milestones are reached on time, a child may develop learning difficulties in later years. Our dedicated CANDO program works with children with CHD throughout their childhood and teen years, in order to identify and manage any developmental problems.

Features of our program include:

  • Regular assessment and treatment: Our team meets with your child regularly to look for specific developmental, behavioral, and neurocognitive problems. Evaluations begin in infancy and continue through the teenage years.
  • Renowned experts: Our experienced team includes experts in child development, neurology, and neuropsychology who are well-trained in identifying problems and planning treatment programs. Our specialists have undergone specialized training in cardiac neurodevelopment.
  • Early intervention: The earlier we identify a problem, the better the opportunity for a successful outcome. If we determine your child has a developmental or learning difficulty, we will provide recommendations, plan treatment, and work with your child’s cardiologist and pediatrician. Our goal is to begin a treatment plan before your child reaches the school-age years.  

What Does the CANDO Program Do?

The CANDO program is a long-term care program. We are with your child often from birth and continuing through the teenage years. This continuity of care means that we know our patients thoroughly, from their heart condition to their favorite ice cream flavor. We are always available to discuss your child’s treatment and progress with you.

The CANDO Program provides:

  • Comprehensive profile: We create a detailed profile of your child’s developmental cognitive and behavioral strengths and weaknesses.
  • Evaluation: We perform comprehensive evaluations for neurodevelopmental disorders such as ADHD or other learning disorders
  • Treatment planning: We provide families with information to guide treatment and intervention for developmental delays.
  • Ongoing monitoring: We monitor your child’s progress and the effectiveness of the treatment over time.

Cardiac Neurodevelopmental Care: What to Expect 

We divide our patients into two categories: infants and toddlers (from birth to age 4) and school readiness (ages 4 and up). Here’s what you can expect during the different stages:

Infant and Toddlers (ages 0-3+)

  • Evaluation: Our developmental specialists evaluate your child, gathering information on your child’s motor, cognitive, and language development, as well as play, behavior, and feeding skills.
  • Treatment recommendations: During the visit, we provide recommendations to support your child’s development. We will share those recommendations with your child’s cardiologist and pediatrician.
  • Screening visit: Our neurologist will conduct a neurological screening and schedule follow-up visits as necessary.
  • Therapy referrals: If necessary, we will make referrals for your child for physical, speech, or occupational therapy. 

School-Age (ages 4+)

  • Evaluation: Your child will undergo a comprehensive neuropsychological evaluation before starting kindergarten or first grade and again before middle school and high school. These evaluations assess the range of your child’s thinking skills, including:
    • Intellectual skills
    • Attention skills
    • Executive skills
    • Learning and memory
    • Visual-spatial
    • Motor skills
    • We also evaluate emotional, behavioral, and social functioning.
  • Recommendations: We provide detailed recommendations with the goal to promote development and learning. We will share the recommendations with your child’s cardiologist and pediatrician. In addition, we can share the report with your child’s school if he or she needs any special services. 
  • Neurology screening: We perform an additional neurology screening visit and follow up as needed between ages 4 and 5.
  • Evaluations for teens: When your child reaches the teen years, we perform evaluations to help your child transition to adulthood. 

Enrolling in the CANDO Program

If a child undergoes heart surgery within the first year of life, we automatically enroll the infant in our program. Before the family leaves the hospital, a CANDO team members talks to the family and arranges and outpatient appointment for the baby.

Other ways to enroll your child:

  • Your child’s pediatric cardiologist can refer your child to our program at any age, as long as your child meets at least one of the following criteria:
    • Had heart surgery in the first year of life
    • Has a cyanotic heart defect (a congenital heart defect that results in low blood oxygen level)
    • Has a heart defect and neurologic risk factor
    • There is a concern during routine exam in a child with CHD that there may be a developmental problem
  • Your pediatricians can refer your child or you can contact us directly after discussing whether the child qualifies. 

Contact Us

To learn if your child would benefit from a CANDO visit or to schedule an appointment at Children’s National, call 202-476-6867.

Cameron H.'s Story

Transposition of the Great Arteries TGA

Children's National Health System

"If your child has been diagnosed with a heart defect, please know that Children's National will provide your child with the best care possible."

Cameron H.'s Story

Cardiac Neurodevelopmental Outcome Program Team

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Resources for Families

Learn about our programs for families, from our social work and concierge services, to Child Life Specialists who help support your child during treatment.