What to Expect After a Congenital Heart Defect Diagnosis
Learning that your child has a congenital heart defect (CHD) can feel overwhelming. Many parents say the moment they hear the diagnosis feels like the world has suddenly turned sideways.
“My first reaction was to pick my baby up and run out the door, somehow thinking that would save her life. The feeling was indescribable.”
At Children’s Healthcare of Atlanta Cardiology, it is our privilege to care for children with congenital heart disease so they and their families can get back to living life fully. If you are just starting your heart journey, here are a few basics about what to expect.
Receiving a Congenital Heart Defect Diagnosis
“A doctor I didn’t know, with ‘Pediatric Cardiologist’ stitched on his white coat, was at the door. In that moment, I knew our entire world was about to be flipped upside down.”
A congenital heart defect is rarely diagnosed with a single test. Your doctor may review your child’s family history, evaluate risk factors and perform a physical exam.
Additional testing may include:
- Electrocardiogram (EKG)
- Echocardiogram (echo) – an ultrasound that shows how the heart looks and functions
Once your child receives a diagnosis, the first days and weeks can feel stressful. These simple do’s and don’ts may help you navigate this new normal.
Do’s and Don’ts After a CHD Diagnosis
Don’t Google too much. Many heart parents say searching online can cause unnecessary stress and confusion, especially early on. Congenital heart defects vary widely, and information online may not apply to your child’s specific condition.
Do ask your doctor for trusted resources. Your child’s cardiologist can guide you to reliable information and support organizations.
Do write down questions. Many parents keep a notebook nearby or use the notes app on their phone to capture questions as they think of them.
Do practice self-care. Caring for a child with a heart condition can be emotionally and physically exhausting. Ask for help when you need it.
As one heart parent shared, “You will need your strength so you can be strong for your child.”
Preparing for Your First Pediatric Cardiology Appointment
Preparing for your child’s first cardiology visit can help ease anxiety. Check with your provider’s office to see what forms or records you should bring.
Pediatric cardiology appointments often last two to three hours, depending on testing and your child’s needs.
You may spend time waiting while other patients are seen or while test results are reviewed. Cardiologists carefully review imaging and test results before discussing findings and treatment plans with families.
Bring items to keep your child comfortable during the visit, such as:
- Snacks or drinks
- A favorite toy
- A tablet or movie for younger children
Echocardiograms often take additional time because technicians must capture detailed images of the heart. Cardiologists review these images before discussing results with you.
It can also help to bring something for yourself, such as a book or magazine. Many parents also bring a notebook or use their phone to record important information from the visit.
Building a Support System
“Finding out there is something wrong with your unborn child is devastating. I felt very scared and isolated.”
Caring for a child with CHD can be stressful, especially at the beginning. Building a support system can make a big difference.
Talk to family members and close friends about your child’s condition. Your cardiology team can help explain the diagnosis and treatment plan so you can share accurate information with loved ones.
Support groups can also help families connect with others who understand the journey. Children’s Healthcare of Atlanta and Children’s Cardiology offer a program called Kids at Heart, which includes mentorship programs, educational opportunities and family events.
Many parents find comfort in speaking with another heart parent who has been through a similar experience.
Don’t be afraid to accept help when it is offered. The people in your life want to support you, and one day you may be able to support another family going through a similar journey.
If your child has recently received a congenital heart defect diagnosis, remember that your pediatric cardiology team is there to guide you through every step of the journey.
Related:
What to Expect at a Children’s Cardiology Clinic Visit
Symptoms of CHD in babies, toddlers, pre-teens, and teens
Pediatric ECHOs and EKGs Reveal Information About the Heart
Son’s CHD Diagnosis Gives Dad a Deeper Appreciation of Fatherhood
For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.