Cardiac Neurodevelopmental Clinic

Children who are born with complex congenital heart disease (CHD) are at risk for problems with how their central nervous system grows and develops.

The Cardiac Neurodevelopmental Clinic evaluates and treats babies and children with complex CHD who have had heart surgery before their 1st birthday. We provide close follow-up in the first 5 years of life and keep seeing children through age 18.

A visit to the clinic can reassure you that your child’s central nervous system is developing normally. If we find any concerns, we will connect you with therapies that help.

• What are the ways that CHD might affect development?

  CHD may affect many ways a child develops, including:

  • Coordination (motor skills)
  • Thinking (cognitive skills)
  • Emotions, behavior and relationships
  • Feeding
  • Hearing
  • Speech and language
  • Play skills, such as knowing shapes, patterns and colors
  • Attention, learning and memory
  • Being ready to start school
• How is this program different from early-intervention programs?

  Early-intervention programs provide in-home therapy services, like physical, occupational and speech therapy. Our program checks whether your child needs such services. We also suggest treatment goals that your child and their early-intervention team can work toward.

The Cardiac Neurodevelopmental Clinic is the only clinic of its kind in Washington. It brings together experts from Seattle Children’s Heart Center and the Center on Human Development and Disability (CHDD) at UW Medical Center – Montlake.

• Many experts working together
  • Your child’s first visit to the clinic is a complete screening by providers from many areas of pediatric growth and development.
  • Each member of the clinic team is an expert in their specific area. As a group, they have the knowledge and skills to check all aspects of your child’s progress.
  • Our team-based approach means we may find small, hard-to-find delays or issues that a single provider on their own may not notice.
  • After our comprehensive evaluation, the team works together to recommend a plan that fits your child’s exact needs.
• We connect you with care close to home
  • The CHDD has more than 40 years of experience working with families and healthcare providers in Washington, Alaska, Montana and Idaho.
  • Our experience helps us connect you with the therapies and other services your child needs near where you live.
  • We focus on understanding your child’s unique strengths and challenges, and then we help you find resources in your community to help your child thrive.
  • By seeing your child on a regular schedule throughout childhood, we can adapt our recommendations to their changing needs. If your child needs different providers or therapies over time, we are here to help you find the right match.  
• Support for your whole family
  • Whatever types of care your child needs, we will help your family through this experience. We will discuss your child’s condition and treatment options in ways you understand and involve you in every decision.
  • Our Child Life specialists know how to help children understand their illnesses and treatments in ways that make sense for their age.
  • Seattle Children’s has many resources, from financial to spiritual, to support your child and your family and make the journey as smooth as possible.
  • Read more about the supportive care we offer.
• Research to improve quality of life
  • Seattle Children’s is a member of the Cardiac Neurodevelopmental Outcome Collaborative. This group of experts from nearly 50 hospitals works to enhance the lives of children with heart disease and their families through clinical, quality improvement and research projects.
  • Michael Portman and Vishal Nigam are studying ways to prevent brain injury in children who need to be on a heart-lung machine (cardiopulmonary bypass) during heart surgery.

Together, the clinic team:

• Screens your child to find any neurodevelopmental issues
• Makes a plan to meet your child’s exact developmental needs
• Recommends therapies to help your child reach their full potential
• Checks your child’s progress and adjusts the plan as needed as your child grows

Our services include:

• Comprehensive evaluation

  For babies with the most severe heart defects, a neurodevelopmental pediatrician will do an initial screening while your baby is in the hospital recovering from heart surgery.

  For most children with CHD, a cardiologist or primary care provider will refer your baby to the Cardiac Neurodevelopmental Clinic for a comprehensive evaluation around 6 months of age. 

  At the clinic, your child will see providers from many areas of healthcare. The exam will take about 3 hours. It will include:

  • Standard tests of motor, cognitive and language skills
  • Screening for hearing loss
  • Nutritional assessment and counseling
  • Complete neurological exam
  • Support and guidance for you about your child’s needs
• Report and resources

  After the evaluation, we will create a detailed report of your child’s strengths and challenges and recommend ways to better your child’s development. We will work with you to make a plan. Often, this means we will refer you to therapists or doctors in your community.

  We will also give you information on topics like these:

  • How to help your child get ready for school and succeed
  • How to help them connect with and relate to other children their age
  • How your child and family can cope with challenges and thrive
  • Where to find more resources and support
• Monitoring over time

  After your first visit, we will see your child in clinic every 6 months for the first 2 to 3 years of life. After that, we will see them once a year until age 5 and once every 2 to 3 years through the rest of childhood.

  Many children with CHD need more than 1 surgery in early childhood. These surgeries may affect their development. Your child’s neurodevelopmental team will check your child carefully over time and work with you to adjust their care plan as needed.