Awareness of Birth Defects Across the Lifespan: Infancy

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 equip you to make the best possible choices for your child’s health. If your baby is diagnosed with a birth defect during pregnancy or born with a birth defect or other health condition, they may need special care as they grow and develop. Children with special healthcare needs can benefit from the medical home approach to care—personalized medical care where healthcare providers and families work together—to make sure that the medical and nonmedical needs of children and families are met.

Many children with birth defects lead long and happy lives. However, birth defects remain critical conditions that can cause lifelong challenges. Birth defects are a leading cause of infant mortality in the United States, accounting for about 1 in every 5 deaths in the first year of life. Thanks to improvements in medical care, infant deaths due to birth defects are declining overall but not all babies are benefiting equally.

Doctors and researchers are continually working to discover new treatments to improve the survival and health of babies with birth defects:

• Newborn screening for critical congenital heart defects: Advancements such as improved newborn screening and early detection of birth defects save lives. Newborn screeningidentifies conditions that can affect a child’s long-term health or survival, such as critical congenital heart defects. All 50 states and Washington, D.C. have newborn screening programs that test for critical congenital heart defects; these screenings are projected to save at least 120 babies each year.
• Monitoring bladder and kidney function in infants and children with spina bifida: Many babies born with spina bifida have healthy kidneys at birth but are at risk for developing kidney failure. Infants born with spina bifida often develop kidney problems at a younger age than those without it. CDC’s Urologic Management to Preserve Initial Renal Function Protocol for Young Children with Spina Bifida (UMPIRE) program helps healthcare providers find early signs of kidney and bladder problems among infants with spina bifida. Early recognition helps preserve the health of these vital organs.