Having a baby is a special, life-changing experience. But it can also come with unique challenges, especially if your baby was diagnosed with a heart defect before or after birth.
After a heart defect diagnosis, parents and caregivers must learn how to care for a child with special health care needs. This new world of surgeries, procedures, specialists, appointments, and medications can be overwhelming. It is not uncommon for you to experience emotions ranging from sadness, to fear, to guilt and to confusion.
It helps to remember that you are not alone. There are many resources available to help care for a child with a heart defect, from birth to adulthood. Read on to learn more.
Informational resources: becoming an expert and an advocate
Having the right information can help you make the best possible choices about your child’s cardiac care and treatment. Ask questions and learn about your child’s diagnosis, medications and treatment plan.
Tools you can use
- Conquering CHD Guided Questions Tool
- Mended Little Hearts: Empowering Parents to Make Healthcare Choices
- Adult Congenital Heart Association: When Your Child Has a Heart Defect: Planning Ahead for Lifelong Heart Health
Developmental resources: helping your child thrive
Children with heart defects may not meet developmental milestones at the same time or do as well in school as their peers without heart defects. Some may also have to miss school at times for appointments, testing or procedures.
Early intervention can have a significant impact on a child’s ability to learn new skills and overcome challenges. These services and support include special education, speech therapy and physical therapy.
You know your child best. Talk to your healthcare provider if you have concerns about the way your child plays, learns, speaks, acts or moves.
Tools You Can Use
- CDC’s Milestone Tracker App
- Conquering CHD’s School Intervention Series: A Complete Resource Guide
- Mended Little Hearts: Managing Neurodevelopmental Issues
Healthcare resources: plan for your child’s transition to adult care
Teens with heart defects may face unique challenges as they transition from childhood to adulthood. They need to learn new skills, start to gain independence, and interact with the doctor on their own. Eventually, they must prepare to transfer from a pediatric doctor (whom they may have known all their lives) and pediatric health system to an adult doctor and adult health system.
It is especially important for people with heart defects and their families to begin planning for this transition during childhood. This will help them lead healthy and independent lives as adults.
Tools you can use
- Adult Congenital Heart Association: Preparing for College When You Have Congenital Heart Disease
- Adult Congenital Heart Disease Clinic Directory
- Conquering CHD’s Transition Checklist
- Conquering CHD’s Guide to Your Child’s Future Care
Emotional support resources: connecting with others living with heart defects
It is not unusual to feel a sense of isolation when you find out your child or family member has a heart defect. Talking with people who have been through similar experiences may help.
Ask your healthcare provider or social worker to refer you to community support groups or put you in touch with another family that has gone through similar situations. There are also several national organizations that can provide helpful resources for families and caregivers.
Tools you can use
- Congenital Heart Defects Support Network: The American Heart Association and the Children’s Heart Foundation
- Mended Little Hearts: Support for Heart Patients and Their Families
- Conquering CHD: Connecting with Others
- Adult Congenital Heart Association: Heart To Heart Peer Mentors
Most children with congenital heart defects will go to school, participate in hobbies, sports and other activities in their community. Most of these children will learn and grow much like other kids their age. It is important to remember that people with congenital heart defects continue to require lifelong care from a congenital cardiac specialist to maintain their health and address any issues. For example, you’ll need to work with your child’s health care team to address nutritional needs, exercise, and cardiac specific risk factors that may change at different points in your child’s life.
Make sure to ask the doctors, nurses, and other medical professionals about your child’s heart defect now, and what to expect in the future. From an early age, encourage your child to ask their pediatric cardiologist and other healthcare providers questions as well. This will help your child feel more in control of their health, and that confidence will grow and continue throughout their lives.