Shared knowledge on CHD to help parents and providers recognize warning signs and act early.
Time to Build Your Toolbox
A healthy heart supports energy, breathing, and growth — not just a steady beat.
Tool to add to your parental toolbox: Notice how easily a baby gets tired during normal play or daily activity. Fatigue that feels unusual or out of proportion can be a sign the heart is working harder than it should.
Breathing patterns can reveal how hard the heart is working.
Tool to add to your parental toolbox: Watch breathing during feeding, rest, or activity. Persistent fast or labored breathing — even when a baby is calm or resting — can be a sign the heart is under strain.
Color changes can indicate oxygen delivery issues related to heart function.
Tool to add to your parental toolbox: Look closely at skin color during rest and activity. Blue or gray lips, nails or skin are never “just cold.”
IMPORTANT: A bluish tint (cyanosis) can look different depending on skin tone. On darker skin, it may appear gray, ashen, purple, or around the lips, gums, nail beds, or eyes rather than bright blue. CLICK image below for a larger view.
Feeding should not exhaust a baby.
Tool to add to your parental toolbox: Notice sweating, prolonged feeding times, or poor weight gain. These can be signs the heart is under stress.
Frequent illness isn’t always “just part of childhood.”
Tool to add to your parental toolbox: Pay attention to repeated respiratory infections, chronic cough, frequent ear infections, or persistent allergy-like symptoms — especially before age 5 years. Some heart conditions affect lung circulation, which can contribute to frequent respiratory symptoms.
TUNE IN to the PEDx Podcast as Dr. Bill Stein, a pediatric cardiothoracic surgeon, shares insights on this topic: https://www.podomatic.com/…/2022-02-09T13_23_24-08_00
Congenital heart defects are lifelong conditions.
Tool to add to your parental toolbox: Pay attention to fainting, chest pain, dizziness, shortness of breath, or exercise intolerance in teens and young adults. These symptoms should never be ignored.
Be sure to discuss any concerns with your teen’s doctor, and if you have a young adult, encourage them to bring up any issues with their own doctor.
If something doesn’t feel right, it deserves attention.
Tool to add to your parental toolbox: Document concerns, ask questions, request follow-up, and seek second opinions when symptoms persist. Parental instincts are a powerful tool in timely detection.
*This is educational awareness only. Always talk to your child’s doctor about any big or small concerns you may have.
Congenital heart defects (CHD) affect nearly 1 in 100 babies, yet many families don’t learn about CHD until a diagnosis. Education matters because timely detection can save lives.
CHD can affect individuals at every stage of life, from infancy through adolescence and young adulthood. Ongoing education helps families understand that heart health does not end after the newborn period and that questions and concerns are valid at any age.
Parents and caregivers are essential advocates. If you have any concern—big or small—reach out to your child’s doctor. Asking questions and speaking up helps ensure concerns are addressed.
We encourage parents and caregivers to keep “Building Their Parental Toolbox” saved. After all, as long as there are hearts, there will be CHD.
Visit Hole in the Heart social media and our website for ongoing CHD education and programs—because awareness saves lives.
Why CHD Education Saves Lives
MEDICAL RESOURCES:
What Does a Healthy Heart Look Like?
• American Academy of Pediatrics: Heart Screening Questions for Parents
• CDC: Congenital Heart Defects — Signs & Symptoms
Breathing is a Clue
• CDC: Fast or Labored Breathing in Infants and Children
• NIH/NHLBI: When to Seek Evaluation for Breathing Concerns
Color Matters
• CDC: Cyanosis and Congenital Heart Defects
• AAP HealthyChildren.org – Skin Color Changes in Infants
Feeding is Hard Work
• AAP HealthyChildren.org – Feeding Difficulties in Infants
• CDC: Poor Weight Gain and CHD
Allergies & Recurrent Infections
• AAP: When Frequent Infections Signal an Underlying Condition
• CDC: Recurrent Respiratory Infections in Young Children
Teens & Young Adults
• Adult Congenital Heart Association (ACHA)
• CDC: Congenital Heart Defects Across the Lifespan
Trust Your Parental Instincts
• AAP: When to Advocate for Further Evaluation
• HealthyChildren.org: Trusting Parental Concerns
Hole In The Heart 