Awareness of Birth Defects Across the Lifespan

Join the nationwide effort to raise awareness of birth defects and their impact on individuals, parents, and families.

Living with Birth Defects cover
Sira Perez-Visona
Andrea Pagan
Lindsey Flax

No two people with birth defects are exactly alike. Listening to and sharing stories from individuals and families impacted by birth defects can raise awareness and improve understanding of their needs and experiences.

Birth defects are structural changes present at birth that can affect almost any part of the body. Advancements in medicine and surgery have led to better survival, and thankfully, more children born with birth defects grow up to lead full lives.

Awareness of birth defects across the lifespan helps provide individuals, parents, and families affected by birth defects the information they need to seek proper care. It also gives healthcare professionals the evidence they need to deliver the best care for patients across all stages of life: before and during pregnancy, and in infancy, childhood, adolescence, and adulthood.

Before and During Pregnancy

Birth defects can happen for many reasons. Although not all birth defects can be prevented, people can increase their chances of having a healthy baby by managing health conditions and adopting healthy behaviors before becoming pregnant.

Learn more about birth defects prevention before and during pregnancy.


Having a baby is a special, life-changing experience, but it can also present challenges for new parents. Parents of a child with a birth defect can face these challenges and prepare for their child’s needs by learning about their child’s condition. This knowledge can help you make the best possible choices for your child’s health.

Learn more about the health needs of infants with birth defects.


Meeting the complex needs of a person with birth defects involves the whole family and can be challenging at times. But finding resources, knowing what to expect, and planning for the future can help. Early intervention services and supports, including special education, speech therapy, and physical therapy, can have a significant impact on your child’s ability to learn new skills, overcome challenges, and increase success in school and life.

Learn more about educational needs and special healthcare needs for children with birth defects.


Adolescents and young adults living with birth defects may face unique challenges as they transition from childhood to adulthood. Transition to adult health care can be tricky for teens and young adults living with a birth defect; they may need to navigate changes in insurance, or transition from a pediatric specialist (whom they may have known all their lives) to an adult specialist. Some may gain responsibility for their own care decisions. It is especially important for people with birth defects and their families to begin planning for this transition during childhood so they can lead healthy, independent lives as adults.

Learn more about the transition from pediatric to adult medical care for adolescents with birth defects.


With every pregnancy, a person starts out with a 3% chance of having a baby with a birth defect, regardless of underlying health conditions or lifestyle factors. Many people with birth defects and other health conditions have healthy, uneventful pregnancies. However, people with birth defects may be more likely to have a baby with a birth defect. Talking with a genetic counselor can be helpful. People living with birth defects should talk with their healthcare providers, before becoming pregnant, about how a pregnancy might affect them and their baby.

Learn more about planning for pregnancy, recurrence prevention, and genetics and family history for adults with birth defects.