If your baby was born with a birth defect, you might feel overwhelmed and unprepared. But you're not alone, and many people and resources are available to help you and your child.
What Are Birth Defects?
A birth defect (also called a congenital disorder or congenital anomaly) is a health problem that a baby is born with. There are many different types of birth defects, and they can range from mild to severe.
Usually, the cause is not known. Some birth defects run in families (are inherited), but others do not.
How Can Parents Help?
If your child is born with a birth defect:
Acknowledge your emotions. You might feel shock, denial, grief, and even anger. Accept those feelings, and talk about them with your spouse/partner and other family members. You also might consider talking to a social worker, counselor, or psychologist.
Celebrate your child. Let yourself enjoy your baby the same way any new parent would — by cuddling and playing, watching for developmental milestones (even if they're different from those in other children), and sharing your joy with family members and friends. Some parents wonder if they should send birth announcements. This is a personal decision — the fact that your baby has a health problem doesn't mean you shouldn't be excited about the new addition to your family.
Learn all you can and get support. Understanding your child’s condition can help you get them the best care possible. Go to your child’s doctors and care team with any questions. Talking with someone who's been through the same thing also can help. Consider joining a support group — look online or ask your health care provider or a social worker about local groups.
You also can find more information and support online at:
Keep records. Use a notebook or your phone to keep track of your child’s appointments, medicines, and treatments.
If needed, find different ways to pay for treatment and care for your child. There can be extra costs in caring for a child with a health condition. Besides health insurance, other places to look include nonprofit disability organizations, private foundations, Medicaid, and state and local programs. A social worker can help you learn more about these.
Get help early. Early intervention services and support are available to babies and children with special needs. Services can include:
Early intervention programs can also:
- tell you where you can get information about your child’s condition
- help you to learn how to care for your child at home
- help you find payment options and tell you where you can find free services
- help you make important decisions about your child's care
- provide counseling
Ask your child's doctor or a social worker at the hospital where you gave birth about the early intervention program in your area.
Work as a team. Your child may need to get care from a team of providers, including a primary care provider and medical specialists. Be sure that all providers know who is part of your child’s care team. This way, they can share information (with your permission) and work together to give your child the best care possible.
What Else Should I Know?
Research continues into the causes of birth defects and ways to diagnose, prevent, and treat them.
Some new developments in testing can give a diagnosis at an earlier stage of pregnancy. This gives parents more time to seek advice and consider their options.
Gene therapy is developing as a way to fight or prevent genetic illnesses. Someday, it might be possible to replace or block the genes that cause these health conditions.
Genetics research is advancing quickly. The Human Genome Project created a map of all human genes. It shows where the genes are located on the chromosomes. Doctors can use this map to find and treat or cure some kinds of genetic disorders. There is hope that treatments for many genetic conditions will be developed in the future.