Birth Defects are Critical
Birth defects are critical conditions, meaning they can be very serious, even life-threatening. Each year, about 1 in every 5 deaths of babies in the first year of life is caused by birth defects in the United States.1 For example, Hannah was born with several complex heart defects. Three weeks after she was born, she underwent open-heart surgery to begin her repairs. While the surgery was considered successful, Hannah passed away early the next morning. Her parents say, "Hannah was a fighter until the end and we will forever be grateful for the three weeks we were able to spend with our little angel." Birth defects can also be critical beyond infancy, causing 5-10% of deaths in children up to age 14 years.2
What challenges do people with birth defects face?
Babies with birth defects who survive their first year of life can have lifelong challenges, such as problems with infections, physical movement, learning, and speech. Some people with birth defects have issues that are more severe. Examples of some challenges that people with birth defects face are shown below:
- Heart Defects: Some people with a heart defect have little or no disability. For others, disability might increase or develop over time. Some health problems they might face include irregular heartbeat, increased risk of infection in the heart muscle, or weakening of the heart over time. For example, William was born with a heart defect called tetralogy of Fallot. When he was 15 years old, doctors discovered his heart rate was dangerously low: less than 30 beats per minute. So, he had to get a pacemaker. William says, "As the medical community learns and moves forward, people with heart defects have and will benefit as a result. Now, we live longer, healthier lives. However, our surgery is not a total cure, and, as we age, we still suffer effects of these conditions. Continued medical care and ongoing research is vitally important to each of our lives."
- Orofacial clefts (birth defects of the lip and mouth): In addition to surgery to repair their defect, babies born with these conditions often need other services, like speech therapy or special education services. For example, Pablo started with an occupational therapist and a speech therapist (who he still sees weekly). He also meets with a speech pathologist regularly as well as an ear, nose, and throat doctor, a dentist, an orthodontist, and a plastic surgeon. "He is brave and strong, but at his age, he does not accept all medical procedures and treatments well," says Pablo's mom. "He is starting to ask doctors questions, and he is starting to ask about options. I know one day he will be a wonderful role model for other kids with cleft lip and palate."
- Spina bifida (a major birth defect of the spine): People affected by spina bifida get around in different ways. These include walking without any aids or assistance; walking with braces, crutches or walkers; and using wheelchairs. Elley was born with spina bifida and relies on a wheelchair to move around. Her mom says, "Yes, heads turn when a wheelchair rolls into a room, but she uses that attention to force people to talk to her. She is a social butterfly!"
What is CDC doing?
CDC's National Center on Birth Defects and Developmental Disabilities (NCBDDD) works to identify causes of birth defects, find opportunities to prevent them, and improve the health of those living with birth defects.
- Tracking: Accurately tracking birth defects is the first step in prevention. CDC's NCBDDD funds 14 states to track major birth defects. State systems use data from population-based tracking to direct birth defects prevention activities and refer children affected by birth defects to needed services. In addition, 16 of the 24 grantees funded by CDC's National Environmental Public Health Tracking Network also report birth defects data. These data are used to better understand the relationship between birth defects and environmental factors.
- Research: CDC's NCBDDD funds the Centers for Birth Defects Research and Prevention, which collaborate on large studies such as the National Birth Defects Prevention Study (births 1997-2011) and the Birth Defects Study To Evaluate Pregnancy exposureS (BD-STEPS, to start in 2014). These studies work to identify risk factors for birth defects. CDC also researches health services use and costs associated with birth defects, which are important considerations in helping children with birth defects reach their full potential.
- Prevention: CDC and its partners can use what they learn through research to prevent birth defects.
- Folic acid: We have learned that getting folic acid before and during the early weeks of pregnancy can reduce the risk of serious birth defects of the brain and spine (spina bifida and anencephaly). About 15,000 babies in the United States have been born without one of these serious birth defects as a result of folic acid fortification.
- Preconception care: CDC and its partners work to educate women about the importance of preconception health through a campaign called Show Your Love.
- Improving the lives of individuals with birth defects: Babies who have birth defects often need special care and treatments to survive and thrive. Birth defects tracking systems provide one way to identify and refer children for services they need as early as possible. Early intervention is vital to improving outcomes for these babies.
- Before Pregnancy
- Healthy Pregnancy
- Birth Defects Information
- National Birth Defects Prevention Study
- National Birth Defects Prevention Network
- Beating Birth Defects (English)
- Folic Acid: Helping to Ensure a Healthy Pregnancy. (English or Spanish)
- Put Down That Drink if You Are Pregnant (or Trying to Be)! (English or Spanish)
- If You're Pregnant, Don't Smoke. (English or Spanish)
- Mathews TJ, MacDorman MF. Infant mortality statistics from the 2009 period linked birth/infant death data set. National vital statistics reports; vol 61 no 8. Hyattsville, MD: National Centers for Health Statistics. 2013.
- Heron M. Deaths: Leading causes for 2009. National vital statistics reports; vol 61 no 7. Hyattsville, MD: National Center for Health Statistics. 2012.
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