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Developmental Follow-up Program
Video: Learn more about our program
The critical first three years
For many reasons, skills like talking, crawling, and playing can develop more slowly in children who have had heart surgery or care for complex congenital (present at birth) heart defects early in life. They can also be more susceptible to other medical conditions. Our developmental experts, including highly-specialized developmental pediatricians, nurses, and occupational, physical, and speech therapists, will stay close to your child, especially during the important first three years of life. They will work with you to monitor for developmental delays and encourage your child’s abilities in many areas of life. We recommend that all children with complex heart disease or who undergo surgery as infants participate in follow-up even if doing well. Our team is skilled in detecting subtle signs of a problem that may respond well to early therapy.
The Developmental Follow-up Program staff regularly will conduct a total assessment of your baby's growth and progress in all areas of development, also called “neurodevelopment.” We like to see and evaluate children every six months through age 3, but you are welcome to participate in the program at any time.
Each neurodevelopmental assessment will look at progress to date and keep track of milestones and measures in areas including:
- Motor skills
- Play skills
- Feeding Language development
- Growth Nutrition Hearing
Partnering with parents and physicians
As parents, you are vital members of your child’s care team. After each assessment, program staff will share results and will send a report to your child's cardiologist and primary care doctor. The results will include recommendations of things you can do between visits to help boost your child's development.
We know that caring for a child undergoing treatment or recovering from a medical condition can be stressful for families, with or without developmental delays. Our team members are ready support you.
Resources as your child matures
For children ages 3 and older, the Herma Heart Institute’s psychologists and neuropsychologists can help parents with their child's transition into school and their progression from elementary school to middle school to high school and beyond. Our psychologists can work closely with school officials to educate them about your child's special care needs. We also partner with our School Intervention Program to help advocate for any special services a child may need at school to help them reach their full potential.
We recommend that children have an updated assessment at least once during the preschool, school-age and adolescent years. This is important because new issues may develop as the expectations in school increase over time. Short-term psychotherapy services are also available for children with behavioral or emotional difficulties related to their congenital heart disease.
Continued cardiac support into adulthood
For the Herma Heart Institute, our work does not end when your child turns 18. Adults with congenital heart disease may develop new or unique problems later in life and may require specialized care. The Adult Congenital Heart Disease (ACHD) Program at Children’s Wisconsin is one of the leading ACHD programs in the nation, and the largest in the state of Wisconsin. Our five board-certified ACHD specialists are equipped to provide complete care as patients transition from adolescence to adulthood.
Learn more about our ACHD program.
Cardiac Neurodevelopmental Outcome Collaborative
Children's Wisconsin is proud to be part of the Cardiac Neurodevelopmental Outcome Collaborative (CNOC), an organization with over 25 pediatric hospitals that are dedicated to advancing outcomes for individuals with pediatric and congenital heart disease. Learn more about CNOC here.
We believe patient families have a right to know what level of care we provide. Review our quality and outcomes reports.
For kids born with heart defects, neurodevelopmental follow-up is essential, per recommendation from the American Heart Association and the American Academy of Pediatrics. Our clinical researchers Dr. Kathleen Mussatto and Dr. Cheryl Brosig are pioneers in these and other studies helping kids born with heart problems grow up as healthy as possible.