If you’re raising a child with congenital heart disease, you’ve probably noticed this already: Development doesn’t always move in straight lines. Skills can emerge unevenly, stall for a while, or show up in surprising ways.

This month, we're focusing on a core truth for many CHD families: Uneven development is still development. Whether your child is a toddler, school-age, or a teen, understanding this pattern can reduce anxiety and help you decide when to watch, when to support, and when to seek more help.

Throughout this newsletter, you’ll see sections clearly labeled so you can focus on what feels most relevant to your family right now.

Many children with CHD show asynchronous development—strong skills in some areas and slower growth in others. This can be true for children with formal neurodevelopmental diagnoses and for those without any diagnosis at all.

This doesn’t automatically mean something is “wrong.” It does mean development may need to be interpreted differently.

This section may be especially helpful if:

• your child seems advanced in some areas but behind in others

• you’re unsure whether to “wait and see” or pursue support

• you’ve heard “they’ll grow out of it” but still feel uncertain

If your child is a toddler or preschooler:

• Uneven language, motor, or play skills are common

• Watch for progress over time - some faster, some slower across different skill areas

• Support development through predictable routines and lots of play - with people, picture books, and toys (not screens). Consider a reading routine every day using a rotation of free books from the local library.

If your child is school-age:

• Learning or attention challenges may become more noticeable

• Fatigue and processing speed can affect performance

• Classroom supports can help even without a formal diagnosis. Set up a face-to-face parent teacher conference. Ask about academic, social, and emotional strengths and weaknesses. Anything need more support?

If your child is a teen or young adult:

• Executive skills (planning, organization, self-monitoring) often lag behind intelligence

• This can affect independence, school, or medical self-management

• Skill-building works best when expectations are realistic and collaborative. What daily living skill could become more independent? What about cooking a simple meal? Laundry? Yard work? Cleaning a bathroom? Scheduling doctor visit? Break it down step by step and be your child's coach.

Wondering whether your child is developing “as expected” can be emotionally exhausting. Many parents describe living in a constant space between vigilance and self-doubt.

This section may be especially helpful if:

• you feel anxious comparing your child to peers

• medical experiences have heightened your worry

• you’re unsure how concerned is “too concerned”

For parents and caregivers:

• Noticing differences does not mean you are failing or overreacting

• It’s okay to observe patterns before taking action; keep being curious and you might want to start taking notes about your observations with some dates.

• Trust grows when concerns are met with information, not reassurance alone. If your concerns have persisted, talk with providers and teachers to gather more information. What's an appropriate first step?

For children and teens:

• Kids often sense adult worry, even when it’s unspoken. Be sure you are doing small things to take care of yourself. Do you need a virtual coffee with a friend?

• Neutral language with a growth mindset supports resilience. Remember that doing hard things and trying new things is how to build grit. Not knowing and making mistakes are necessary.

• “Everyone’s brain grows differently”. If your child feels different, this should be acknowledged. Find developmentally appropriate ways to help your child understand their differences. This includes talking to them about their diagnosis.

Notes about the newsletter: Because children with CHD grow and change in so many different ways, each newsletter highlights shared themes. Some months may feel more closely aligned with your current questions than others. Our hope is that over time, each family finds support that meets them where they are.

This newsletter is for educational purposes only and does not replace individualized medical or behavioral health care. For urgent concerns, contact your care team.