Management & Symptoms of Congenital Heart Disease in Children

28 Feb 2025
Little boy sitting on the bed while dr examines him

Management and Symptoms of Congenital Heart Disease in Children

The information provided in this blog is for educational and informational purposes only. It is not intended as medical advice, diagnosis, or treatment. No one ever prepares you for the moment a pediatric cardiologist walks in with that look. You already know something’s wrong — you’ve known it in your gut since the first murmur was mentioned. But hearing “congenital heart disease” out loud is something else entirely. It’s a phrase that drops like a stone in your chest. Heavy. Complicated. Life-changing. And now, you’re standing in this strange new world of surgical schedules, medications, oxygen levels, feeding tubes, and hospital visits — all while trying to help your child just be a child.

The good news is, you’re not alone in this. Congenital heart disease (CHD) is the most common birth difference involving the heart, affecting nearly 1 in 100 children. Advances in care mean many kids with CHD grow up to lead full, active lives. But the path there? It’s not always straightforward. And that’s okay.

Understanding CHD Symptoms by Age

Symptoms of CHD can look different depending on your child’s age and the specific heart condition they have. Recognizing the signs early on can help you advocate more confidently for your child.

In Infants and Toddlers

These symptoms can be subtle at first:

  • Fast or labored breathing, especially during feeding
  • A bluish tint to lips, tongue, or fingernails (known as cyanosis)
  • Trouble gaining weight
  • Sweating while eating or sleeping
  • Frequent respiratory infections
  • Fatigue after only mild activity

If your baby seems unusually tired, uninterested in eating, or struggles to settle, it’s okay to ask questions—even if you’re not exactly sure what’s wrong.

In Older Children

As kids grow, their symptoms might shift:

  • Shortness of breath during play or sports
  • Chest pain or tightness
  • Dizziness or fainting
  • Rapid or irregular heartbeat
  • Tiring more quickly than peers

Sometimes CHD doesn’t show up until a routine checkup reveals a heart murmur or arrhythmia. You don’t have to know all the signs—but trust your instincts if something feels off.

Managing CHD at Home: Medication, Feeding, and More

Congenital heart disease isn’t just a diagnosis—it’s part of your family’s daily rhythm. Managing it becomes part of life, like packing lunches or reading bedtime stories.

Medication Routines

Many children with CHD take daily medication, and keeping track of dosages and timing can feel overwhelming. Tools like phone alarms, color-coded charts, or pill organizers can help simplify things. Some families use apps that also log vitals and track trends.

Including your child in this routine builds comfort. Let them choose a reward sticker after their medicine or use a pretend toy that “takes” the same meds. Our Butterfly Pig medical play kits include oral syringes and pretend pill bottles, designed to support this kind of practice.

Feeding Challenges

Fatigue during feeding is common in babies and toddlers with CHD. If your child uses a feeding tube, there are creative ways to make it feel less clinical. Let them decorate their tube covers, pick a tape color, or help with simple parts of care when appropriate.

Introducing feeding tubes and syringes through play can ease anxiety. We intentionally design our toys to include accessories that reflect real-life experiences—because when kids see their stories reflected in play, their care feels less scary.

Coping with Appointments and Procedures

Medical care for CHD is ongoing. That means your child will get used to procedures like echoes, EKGs, blood draws, and pulse oximetry. But “used to” doesn’t mean easy.

Preparing Emotionally

Tools like visual schedules and social stories give kids a preview of what’s coming. Role-playing with plush toys or dolls can also be a gentle way to introduce unfamiliar procedures. A plush friend getting an EKG done or having a chest scar can help a child make sense of their experience.
Whenever possible, offer small choices:

  • Which arm gets the blood pressure cuff?
  • What toy comes to the appointment?
  • Do they want music or silence during the echo?

These decisions may feel small, but they’re huge for a child’s sense of control.

What to Expect Before and After Surgery

If surgery is part of your child’s care plan, preparation is key. From fasting before the procedure to the post-op recovery, knowing what to expect makes things more manageable—for both of you.

Prepping Through Play

Try walking your child through what the day will look like using books, dolls, or visual aids. You can even act out the process with a stuffed animal—placing gauze on its chest, giving it a hospital bracelet, or listening to its heartbeat with a toy stethoscope.
These role-play moments build emotional readiness and help reduce fear. Surgery doesn’t have to feel like something happening to your child—it can be something they understand and participate in, even if just through play.

Supporting Recovery

After surgery, recovery involves pain management, healing, and lots of patience. Children often feel more at ease if they have a way to track their progress. Ideas like:

  • Using star stickers to mark each day of recovery on a calendar
  • Naming their incision site (yes, really—sometimes “Scarlet” or “Captain Brave” wins the day)
  • Drawing faces on a simple pain scale chart to express how they’re feeling

These small rituals offer predictability and empowerment in the midst of big emotions.

Navigating School and Activity Life

CHD doesn’t mean your child can’t participate in school or sports. Many children with heart conditions play with their friends, go on field trips, and thrive academically.

Creating a Supportive Environment

Talk with your child’s teachers and coaches. A one-page care sheet outlining symptoms to watch for, medications, and emergency steps goes a long way. Keep the language clear, calm, and non-alarming.

Your child may need extra water breaks, flexible physical expectations, or quiet rest time. Most adults want to help—they just need the right information.

Supporting Your Child Emotionally Through Medical Play

Medical play isn’t just for toddlers. It’s a lifelong tool to process and explore complex emotions around healthcare. When kids act out what they’ve been through, they make meaning out of it.

We build our toys to reflect real medical differences—because every child deserves to see themselves represented. Our plushies include:

  • Central lines
  • Feeding tubes
  • Oxygen masks
  • Heart surgery scars

Children can use these toys to mimic appointments, express fears, or simply show someone else what they’ve experienced. It’s one of the most powerful ways to move from fear into familiarity.

a finger with a pulse oximeter

The Power of Representation in Play

When kids never see bodies like theirs in books, on screens, or in toy aisles, it sends an unspoken message: your story doesn’t belong here. That silence can feel heavier than any diagnosis.

Representation through play is how we begin to rewrite that story. Toys that reflect real differences show children that they are not alone. They are seen, respected, and celebrated exactly as they are.

When a child picks up a plush friend with the same scar or the same tube, they’re not just playing—they’re healing. They’re reclaiming their narrative in a space where they’re in charge.

One Beat at a Time: Moving Forward With CHD

CHD doesn’t come with a predictable timeline. One week might be full of appointments and questions. Another might bring growth, laughter, and quiet moments of strength you didn’t know you had.

You might not know what next month holds—but you know your child. Their courage. Their spark. The way they find joy, even in the mess.

You’re not just managing a condition. You’re helping a child grow up feeling loved, respected, and empowered. That’s the heart of it all.

If you ever need a reminder of how far you’ve come, watch your child grab their toy stethoscope, press it to their chest, and say, “My heart sounds like this.”