Specialized care for children with complex heart problems does not stop once your child’s heart condition is managed.
How can the Heart Institute's Neurodevelopmental and Educational Clinic (NDEC) Help your Child?
Research shows that children with complex heart problems are at a greater risk for neurodevelopment issues when compared to heart-healthy children. Many of these children experience one or more mild deficits across a range of areas. The NDEC can help with:
- The developmental assessment of infants, toddlers, and pre-schoolers to maximize school preparedness
- School difficulties, such as problems with reading, writing, and math
- Difficulties with speech and/or language in infants, toddlers, pre-schoolers, and school-age children
- Feeding problems in infants, toddlers, and pre-schoolers
- Attention, behavioral and emotional problems
- Problems getting along with friends and family
- Issues with task management and organization
- Delayed fine and gross motor skills
Identifying these problems as early as possible allows children to gain access to beneficial supports while they are young, and builds a solid foundation for later learning and future success.
Our Step-by-Step Process
We look forward to partnering with you to help your child reach their fullest potential. Our partnership will involve a step by step process that includes the five following steps:
Step 1: The initial Neurodevelopmental and Educational Clinic Visit: This day will include a screening visit where you and your family will meet with many different providers who will assess your child for any developmental concerns that need further evaluation.
Step 2: Comprehensive Evaluation: Our schedulers will work with you to set up the testing and follow-up appointments that were recommended during your initial visit.
Step 3: Case Conference: After your child's recommended follow-up appointments have been completed, the results of these evaluations will be discussed at our monthly case conference meeting with our entire Neurodevelopmental and Educational Clinic Team. Once this conference has taken place, you will receive a phone call from one of our providers to discuss results and an updated plan. You will also receive a letter summarizing this information.
Step 4: Support in School: If your child is currently in school or preparing to enter school, our Educational Care Team will partner with you to share the results of the comprehensive evaluation with your child’s school. Sharing this information will help to access the educational support that your child needs. The Educational Care Team is available to support pre-school and school-aged children; however, our educators are only able to travel 1 ½ hours away from the hospital. If you live beyond that time frame, school support can be given through a phone conference.
Step 5: Long-term follow-up: As your child grows and develops, The NDEC will provide continuous monitoring and offer age-appropriate support, follow-up screening, reevaluation, and assist with recommended treatments.
Our Neurodevelopmental Team
The NDEC offers specialized neurodevelopmental care to children and adolescents with a history of heart disease. This clinic is unique for many reasons. Most importantly, you and your child will have access to ongoing neurodevelopmental care as your child grows and develops over time. Our multidisciplinary team provides a comprehensive neurodevelopmental evaluation for infants, toddlers, children and adolescents and provides families with the appropriate surveillance, screening, evaluation, and treatment resources needed to ensure the best outcome possible for your child.
Your child’s team of experts will include:
- Pediatric Cardiologists
- Pediatric Cardiac Advanced Practice Registered Nurses and Care Managers
- School Liaison and Education Specialists
- Developmental-Behavioral Pediatricians
- Pediatric Neurologists
- Occupational Therapists who specialize in pediatrics
- Pediatric Nutritionists
- Social Workers
- Child Life Specialists
The NDEC also refers to other specialized clinicians on an as needed basis, including, but not limited to:
- Cardiovascular Geneticists
- Pediatric Psychologists
- Pediatric Gastroenterologists
- Speech and Language Pathologists
- Cardiovascular Rehabilitation Specialists