Cardiac Neurodevelopmental Program at UPMC Children's Hospital of Pittsburgh

Heart disease can range from the common to most complex. But with any diagnosis, learning your unborn child has a heart condition can feel overwhelming.

At UPMC Children's Hospital, we pair psychosocial services with your fetal heart care. We support your whole family's emotional health — from your child's CHD diagnosis through pregnancy and after birth.

The first step is a prenatal tele consult with our Heart Institute psychologist. At this visit, you can address questions and concerns regarding:

• Development
• Coping strategies
• Parenting strategies

This will prepare you for your child’s early hospitalizations and cardiac care.

We can help you:

• Begin to process your child's CHD diagnosis in pregnancy.
• Prepare for your birth experience and parenting while your child is in the hospital and receiving their heart care.
• Discuss what to anticipate following birth in regard to potential neurodevelopmental outcomes and care.

Your child may need surgeries and hospitalization during crucial times in their development.

Our inpatient CNDP:

• Aims to empower your family in the hospital setting.
• Integrates coping and caring activities to support your relationship with your child.
• Fosters your child's growth and development while in the hospital.
• Provides family-centered support and complete care for you, your child, and your loved ones in this stressful time.

Your child's neurodevelopmental care team includes:

• Psychologists and other mental health experts.
• Social Work.
• Physical, occupational, and speech therapists.
• Child life specialists.
• Art and music therapists.
• Lactation consultants.
• Heart doctors and nurses.

After your child leaves the hospital, we may follow with you in conjunction with your cardiology clinic or refer you to the CNDP clinic for routine follow-up and CHD developmental care.

You'll meet with a child psychologist specializing in the development of infants and families with CHD.

The first visit is a virtual check-up one to two months after your child leaves the hospital.

You can share how your child is doing at home and how they've progressed. Our team will offer support and answer any questions you have.

Download the MyCHP app to connect to this visit.

After the visit, we can decide the best time for your child's first in-person neurodevelopmental exam. You can schedule this visit on the same day as your child's cardiology appointments at UPMC Children's main campus.

Visits in early childhood will often occur at:

• 6 to 12 months.
• 18 to 24 months.
• 30 to 36 months.
• 40 to 48 months.

At these visits, we'll complete developmental assessments and a neuromotor screening.

We'll assess how your child:

• Thinks and solves problems.
• Communicates.
• Moves.
• Is growing socially, emotionally, and behaviorally.

Our team will also:

• Ask about your child's sleeping, eating, activity, and behavior.
• Discuss any developmental or behavioral concerns you may have.
• Help you access treatments or resources to support your child in these vital early years.

Once your child is in school, we'll continue to work with you to support their learning and development.

You will meet with our pediatric neuropsychologist, who will:

• Assess your child's thinking abilities, learning skills, and emotional and behavioral functioning.
• Talk about your child's developmental history and what to expect in the future at certain educational and life transitions.
• Address your questions or concerns.

They may ask you to complete questionnaires about their developmental, social, mental, and behavioral well-being.

Your child will also take part in one-on-one testing of their:

• Cognitive abilities, such as abstract thinking, problem-solving, reasoning, and planning.
• Academic skills.
• Language.
• Visual-spatial skills.
• Fine motor skills.
• Attention.
• Higher-level cognitive and self-regulation skills like working memory, organization, and time management.

After testing, we'll give you feedback about your child's cognitive strengths and weaknesses.

They may be right on track. Or, we may suggest support, including guidance for school planning.

As part of our program, we assess your child before they start kindergarten.

And then, we suggest follow-ups:

• Around third grade.
• Before entering middle school and high school.
• At any other point, if concerns arise.

Once your child finishes high school, we will continue to support their learning and development in preparation for post-secondary education or employment.

Similar abilities will be assessed as in previous neuropsychological evaluations, but age-appropriate measures will be used, and the focus will shift to more specific cognitive abilities that are needed in successful day-to-day life in college or on the job.

As an adult, your child, is at increased risk for difficulty with executive functioning, including:

• Planning
• Organizing
• Setting and meeting goals
• Multitasking
• Regulating emotions or behavior

Your child may need accommodations on the job or in college. They will also need neuropsychological evaluations every three years up to age 25. Then, they will need evaluations every five years as needed to document and support their needs.

The Heart Institute and Behavioral Science Division of UPMC Children's team offer specialized behavioral health care for children with CHD.

Children and teens may have higher rates of behavioral or emotional challenges related to their diagnosis of CHD, such as:

• Attention difficulties or ADHD.
• Social, emotional, or behavioral concerns.
• Autism spectrum disorder.
• Depression and anxiety.

Our behavioral health providers offer diagnostic evaluations and evidence-based therapies tailored to each child and family.

If you have any questions or concerns, or behavioral health needs, please call the CNDP at 412-692-8512.

Many of our doctors lead studies to better learn how CHD affects a child's brain development. Your child may be able to volunteer for a study.

Our current research includes:

• Use of MRI to test brain development and structure in people with CHD, from birth to adulthood.
• Developmental and genetic factors that influence brain development in people with CHD.
• Finding biomarkers that can predict brain development in children with CHD.
• How environmental factors can affect how your child's brain develops.

These projects aim to provide earlier diagnosis and detection of risk factors for brain development disabilities.

UPMC Children's is a member of CNOC.

We work with teams across CNOC to optimize clinical, quality, and research initiatives for children with CHD. To learn more about CNOC and access valuable resources, visit the Cardiac Neurodevelopmental Outcome Collaborative website.