Birth defects are common, costly, and critical conditions that affect 1 in every 33 babies born in the United States each year. Read more about what we have learned about birth defects and how women can improve their chances of having a baby born without a birth defect.

Birth Defects Are Common

Every 4 ½ minutes, a baby is born with a birth defect in the United States. That means nearly 120,000 babies are affected by birth defects each year.

Birth defects are structural changes present at birth that can affect almost any part or parts of the body (e.g., heart, brain, foot). They may affect how the body looks, works, or both. Birth defects can vary from mild to severe. The well-being of each child affected with a birth defect depends mostly on which organ or body part is involved and how much it is affected. Depending on the severity of the defect and what body part is affected, the expected lifespan of a person with a birth defect may or may not be affected.

Identifying Birth Defects

A birth defect can be found before birth, at birth, or any time after birth. Most birth defects are found within the first year of life. Some birth defects (such as cleft lip) are easy to see, but others (such as heart defects or hearing loss) are found using special tests, such as echocardiograms (an ultrasound picture of the heart), x-rays or hearing tests.

Causes

Birth defects can occur during any stage of pregnancy. Most birth defects occur in the first 3 months of pregnancy, when the organs of the baby are forming. This is a very important stage of development. However, some birth defects occur later in pregnancy. During the last six months of pregnancy, the tissues and organs continue to grow and develop.

For some birth defects, like fetal alcohol syndrome, we know the cause. But for most birth defects, we don’t know what causes them. For most birth defects, we think they are caused by a complex mix of factors. These factors include our genes (information inherited from our parents), our behaviors, and things in the environment. But, we don’t fully understand how these factors might work together to cause birth defects.

While we still have more work to do, we have learned a lot about birth defects through past research. For example, some things might increase the chances of having a baby with a birth defect, such as:

• Smoking, drinking alcohol, or taking certain drugs during pregnancy.
• Having certain medical conditions, such as being obese or having uncontrolled diabetes before and during pregnancy.
• Taking certain medications, such as isotretinoin (a drug used to treat severe acne).
• Having someone in your family with a birth defect. To learn more about your risk of having a baby with a birth defect, you can talk with a clinical geneticist or a genetic counselor.
• Having certain infections during pregnancy such as Zika virus and cytomegalovirus.
• Experiencing fever greater than 101^oF or having an elevated body temperature due to heat exposure.
• Being an older mother, as the risk of chromosomal abnormalities increases with age.

Having one or more of these risks doesn’t mean you’ll have a pregnancy affected by a birth defect. Also, women can have a baby born with a birth defect even when they don’t have any of these risks. It is important to talk to your doctor about what you can do to lower your risk.

Prevention

Not all birth defects can be prevented. But, there are things that a woman can do before and during pregnancy to increase her chance of having a healthy baby:

• Be sure to see your healthcare provider regularly and start prenatal care as soon as you think you might be pregnant.
• Get 400 micrograms (mcg) of folic acid every day, starting at least one month before getting pregnant.
• Don’t drink alcohol or smoke.
• Talk to a healthcare provider about any medications you are taking or thinking about taking. This includes prescription and over-the-counter medications and dietary or herbal supplements. Don’t stop or start taking any type of medication without first talking with a doctor.
• Know how to prevent infections during pregnancy.
• Be proactive in identifying and treating fever when ill or after getting a vaccine. Treat fevers higher than 101^oF with Tylenol® (or store brand acetaminophen), and avoid hot tubs, saunas, or other environments that might cause overheating.
• If possible, be sure any medical conditions are under control, before becoming pregnant. Some conditions, such as diabetes, can increase the risk for birth defects.

Living with a Birth Defect

Babies who have birth defects often need special care and interventions to survive and to thrive developmentally. State birth defects tracking programs provide one way to identify and refer children as early as possible for services they need. Early intervention is vital to improving outcomes for these babies. If your child has a birth defect, you should ask his or her doctor about local resources and treatment. Geneticists, genetic counselors, and other specialists are another resource.

Every 4.5 minutes a baby is born with a condition that affects the structure or function of their body—collectively, these conditions are referred to as birth defects. They can vary widely in how and where they affect the body, and include things from cleft lip to heart problems. While medical advancements have greatly improved the health and survival of these individuals, many of these conditions are lifelong and require lifelong care.

Achieving the best possible health will look different for different people. No two people living with these conditions are exactly alike. Everyone’s journey is unique, shaped by their specific condition, individual strengths, and the support system in place. What’s important to remember is that a community of support can help people with these conditions no matter what health experiences they are navigating.

Language Matters

While “birth defect” is a medical term, it doesn’t mean that an individual is “defective.” It refers to health conditions that develop in a baby before birth.

In an attempt to be accurate and sensitive, we try to use the specific name of the condition present at birth when possible.

Coordinating Care

Many children living with conditions such as spina bifida or gastroschisis often require care from a variety of specialists and support services. Children and their parents can benefit from the medical home approach to care—personalized medical care where healthcare providers and families work together—to make sure the medical and nonmedical needs of children and families are met. Coordinated care can lead to an improved patient and family experience, more consistent care, and reduced healthcare costs.

Knowledge empowers parents to make the best choices for their child’s future. Understanding the child’s condition is essential to making informed decisions about their health and well-being. Early identification and early intervention also can help a child receive the right care and resources they need to thrive.

Building Independence

Adolescents and young adults living with birth defects may face unique challenges as they grow older. Navigating the shift from pediatric to adult health care may feel challenging, but early planning and support can empower teens.

For young adults considering independence, making a plan to move from pediatric to adult care, together with caregiving family members and healthcare providers, is a key step. Young adults can also start taking charge of other pieces of their care, from keeping track of medical records to understanding what insurance they have.

Together, families can ensure that individuals with birth defects receive the care and services they need to be as healthy, active, and independent as they can be.

Creating Community

Community plays an integral role in the lives of individuals and families affected by birth defects. For families navigating this journey, connecting with others who share similar experiences can be a helpful source of support, advice, and understanding. This connection may be in person or through internet groups hosted by condition-specific organizations.

Additionally, a community-wide focus on inclusion encourages an environment of acceptance that benefits everyone. Disability inclusion means understanding the relationship between the way people function and how they can participate in society, and making sure everybody has the same opportunities to participate in every aspect of life to the best of their abilities and desires. Every community member can make a difference and play a part to help create a place where everyone knows that they belong.

Steps to Healthy Pregnancy

It is important to understand that birth defects can happen for many reasons, and not all birth defects can be prevented.

However, there are steps you can take to help you and your baby be as healthy as you can be.

• Get 400 micrograms (mcg) of folic acid every day.
• Try to prevent infections.
  • Get recommended vaccines.
  • Wash your hands.
  • Get tested for sexually transmitted infections.
• See a healthcare professional regularly.
• Talk to a healthcare professional about taking any medications.
• Avoid alcohol, smoking, and other recreational drugs.

If you are pregnant, your partner, family, and friends can support you in a variety of ways. Pregnancy is an exciting time. But it can also be stressful. Knowing you are doing your best during pregnancy, including staying healthy, can give you and your baby a great start and give you peace of mind.

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. Here are steps you can take to get ready for pregnancy, stay healthy during pregnancy, and give your baby a healthy start in life:

• Get 400 micrograms (mcg) of folic acid every day. Folic acid is a B vitamin. If a woman has enough folic acid in her body at least 1 month before and during pregnancy, it can help prevent major birth defects of the developing baby’s brain and spine (anencephaly and spina bifida). Women can get folic acid from fortified foods or supplements, or a combination of the two, in addition to a varied diet rich in folate. 
• Prevent infections. Some infections that a woman might get during pregnancy can be harmful to the developing baby and can even cause birth defects. 
  • Pregnant and recently pregnant women are more likely to get severely ill with COVID-19 compared with nonpregnant women. COVID-19 vaccination is recommended for people who are pregnant, breastfeeding, trying to get pregnant now, or might become pregnant in the future. Getting a COVID-19 vaccine during pregnancy can protect you from severe illness. If you have questions about getting vaccinated, a conversation with your healthcare provider might be helpful, but is not required before vaccination.
• See a healthcare professional regularly. Be sure to see a doctor when planning a pregnancy and start prenatal care as soon as possible. It is important to see your physician throughout your pregnancy. Keeping all prenatal care appointments, even telehealth appointments, should be a priority.
  • Talk to a healthcare provider about taking any medications. Certain medications can cause serious birth defects when taken during pregnancy. If a woman is pregnant or planning a pregnancy, she should first talk with her healthcare provider before stopping or starting any medications.
  • Talk to a healthcare provider about vaccinations (shots). Most vaccines are safe during pregnancy and some, such as the flu vaccine and Tdap (adult tetanus, diphtheria and acellular pertussis vaccine), are specifically recommended during pregnancy. 
• Keep diabetes under control. Unmanaged diabetes can increase the chance for birth defects and other problems during pregnancy. To manage your diabetes, see your healthcare provider as recommended before and during pregnancy. Also monitor your blood sugar levels, follow a healthy eating plan developed with your healthcare provider or dietician, be physically active, and take insulin as directed. Learn more about how to manage type 1 or type 2 diabetes during pregnancy and gestational diabetes.
• Avoid alcohol at any time during pregnancy. Alcohol in a woman’s bloodstream passes to the developing baby through the umbilical cord. Alcohol use during pregnancy can cause miscarriage, stillbirth, and a range of disabilities. There is no known safe amount of alcohol use during pregnancy or while trying to get pregnant. There is also no safe time during pregnancy to drink. All types of alcohol are equally harmful, including all wines and beer. 
• Avoid smoking cigarettes. The dangers of smoking during pregnancy include preterm birth, certain birth defects (cleft lip or cleft palate), and infant death. Quitting smoking before getting pregnant is best. For a woman who is already pregnant, quitting as early as possible can still help protect against some health problems for the baby, such as low birth weight. It’s never too late to quit smoking. 
• Avoid marijuana and other drugs. Marijuana use during pregnancy may be linked to lower birth weight in infants. There is no known safe level of marijuana use during pregnancy. Women who are pregnant or considering becoming pregnant should not use marijuana, even in states where marijuana is legal. Women using marijuana for medical reasons should speak with their healthcare provider about an alternative therapy that’s safer for pregnant women.
• Avoid overheating and treat fever promptly. During pregnancy, a woman should avoid overheating and treat fever promptly. Overheating can be caused by a fever or exposure to high temperatures (such as getting in a hot tub) that increases a woman’s core temperature. Overheating can increase a woman’s chance of having a baby with certain birth defects.
• Strive to reach and maintain a healthy weight. Obesity increases the risk for several serious birth defects and other pregnancy complications. If you are underweight, overweight, or have obesity, talk with your healthcare provider about ways to reach and maintain a healthy weight before you get pregnant. Focus on a lifestyle that includes healthy eating and regular physical activity.

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.

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 include special education, speech therapy, and physical therapy; these can have a significant impact on a child’s ability to learn new skills, overcome challenges, and increase success in school and life. Below is a brief description/examples of what children living with certain birth defects may experience as they grow up.

Heart Defects

• Many children with heart defects do well in school. However, some CDC research shows that children with heart defects may be more likely to
  • have difficulty with learning, focusing, and communicating
  • miss more than 10 days of school in one year
  • have trouble participating in sports or clubs

• Children with heart defects, who didn’t have any other birth defects, are more likely to need special education services than children without heart defects. Certain conditions requiring special education needs are more common among children with heart defects:
  • intellectual disability
  • problems with hearing or seeing
  • developmental delay
  • learning disability
  • limited alertness in school

• Most children with heart conditions receive preventive care, but fewer than half have a medical home. A medical home is an approach to providing medical care that supports partnerships between patients, medical staff, and families. The patient has a relationship with a personal physician and a care team that’s responsible for providing and arranging the patient’s health care needs. Children with heart conditions are less likely to have a medical home if they are younger, of a racial/ethnic minority group, or have multiple medical conditions.

Spina Bifida

• Many children with spina bifida do well in school. However, some children with spina bifida can experience difficulties, especially children with shunts that are used to treat hydrocephalus (often called water on the brain). These children often have problems with learning and might have difficulty paying attention.

• 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. A physical therapist can work with children, parents, and caregivers to teach them how to exercise the child’s legs to increase strength, flexibility, and movement.

Muscular Dystrophies

• Muscular dystrophies (MD) are a group of rare muscle diseases caused by changes in a person’s genes. Over time, muscle weakness decreases mobility, making everyday tasks difficult. There are different types of MD with signs and symptoms that can appear at different ages and with varying severity. Limited data are available regarding how many people are affected. CDC is working to estimate the number of people with MD in specific areas of the United States.
• Parents can spend years taking their child to different doctors before getting a diagnosis of MD. Early screening and identification can reduce this “diagnostic odyssey,” decreasing the number of tests for a correct diagnosis. Early identification can also ease access to early intervention programs or special education resources. 

Down Syndrome

• Even though people with Down syndrome might act and look similar, each person has different abilities. People with Down syndrome may have an IQ (a measure of intelligence) in the mildly-to-moderately low range and may be slower to speak than other children.
• Children with Down syndrome may need physical, occupational, and speech therapy to help with their development. Many children with Down syndrome learn in regular classes and actively take part in play and childhood activities, both at school and in their community.
• About half of all babies born with Down syndrome are also born with a heart defect. Children with Down syndrome can be affected by a wide variety of heart defects. It’s important that all people living with a heart defect receive lifelong, ongoing specialty medical care for their specific heart defect.

Other Birth Defects

Some babies born with birth defects may also have physical and intellectual disabilities. Specifically, research has shown that children with cleft lip and cleft palate, craniosynostosis, microcephaly, and encephalocele can benefit from developmental services that improve their physical and intellectual abilities.

The exact ages of developmental milestones are different for each child. As a parent, you know your child best. If you think there could be a problem with the way your child plays, learns, speaks, acts, or moves, talk to your child’s doctor and share your concerns. Families, educators, and healthcare providers can work together to set meaningful goals and create a plan to help children living with birth defects reach their full potential.

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. Below is a brief description/examples of what adolescents living with certain birth defects may experience as they transition to adult health care:

Heart Defects

• At this time, even with improved treatments, many people born with heart defects are not cured even if their heart defect has been repaired. As they grow older, they may need additional medications, surgeries, or other procedures, even after initial childhood surgeries.
• CDC scientists and partners found that children and teens with heart defects commonly had other birth defects as well as problems with breathing, mental health issues, or other heart problems. Teens with more severe types of heart defects were most likely to be admitted to the hospital for care.
• Recent survey data suggest that healthcare providers are communicating about transition with most parents of children with heart defects; however, parents are not receiving information about areas of concern, such as replacing the strong relationship with pediatric providers, locating an adult provider, and accessing adult health insurance coverage.
• Among parents of children with special healthcare needs with heart problems who did not have discussions about transition with their child’s healthcare providers, 2 in 3 parents desired a conversation. Specifically, they sought information on long-term healthcare needs and adult health insurance.
• The Adult Congenital Heart Association offers a clinic directory to help young adults transition out of pediatric care. The directory provides information to help adults manage ongoing care related to their heart defect.

These findings highlight the importance of transitioning services for people with hearts defects who move from pediatric to adult medical care. Ongoing specialty medical care helps people with heart defects have healthier lives.

Spina Bifida

• The transition period from adolescence to young adulthood can be challenging, especially for people affected by spina bifida. Young adults with spina bifida face many of the same challenges as teens without spina bifida. But they may have more difficulty with mental health, weight control, physical independence, family relationships, and dating behaviors.
• Based on data from the National Spina Bifida Patient Registry, the majority of healthcare providers at spina bifida clinics typically discuss transition with their patients , around age 15. Healthcare providers and their patients regularly address mobility, bowel and bladder management, and transportation needs during these discussions. However, fewer than 2 in 5 clinics report having a written list of skills or knowledge that patients should have prior to the transition to adult care.
• Recent data from the National Spina Bifida Patient Registry also showed that specific sociodemographic, medical, and functional factors were associated with a higher likelihood of attaining employment in early adult life. These factors, such as continence and self-management skills, are an essential component of successful transition to adulthood for adolescents and young adults with complex conditions such as spina bifida.
• The Spina Bifida Association offers resources that can help children, teens, and young adults with spina bifida.

Starting in childhood, parents and caregivers of teens and young adults with spina bifida should take active steps toward making their children independent. By the time they are older, they can develop the necessary skills to help them reach their full potential and lead independent lives as adults.

Muscular Dystrophies

• As science and medicine advance, people with Duchenne muscular dystrophy are living longer. Their care throughout life is evolving as well. People born with Duchenne muscular dystrophy will see many healthcare providers throughout their lives because many parts of the body, such as the upper legs, upper arms, heart, and lungs, can be affected.
• Based on data from the Muscular Dystrophy Surveillance, Tracking, and Research Network (MD STARnet), 3 in 5 males with Duchenne muscular dystrophy reported discussing transition to adult healthcare providers with their pediatric healthcare providers. However, many adolescent and young adult males living with Duchenne muscular dystrophy don’t have a written transition plan. Having a plan is key to ensuring these individuals receive ongoing, specialty care from adult providers.
• Parent Project Muscular Dystrophy offers resources on transition of care through adulthood. This information includes a transition checklist with questions about individual health needs and goals.

Young adults with Duchenne muscular dystrophy, their families, and their healthcare providers can work together to ensure these individuals receive the care and services they need. These resources help them to stay as healthy, independent, and active as they want to be.

Down Syndrome

• Transitioning from pediatric to adult health care presents questions and concerns for many parents and teens. There are specific challenges for people with Down syndrome, intellectual disabilities, or other special needs. People with Down syndrome may see different types of healthcare providers over their lifetime, as about half of people with Down syndrome are also born with heart defects. They are also more likely to have other health problems including hearing loss, eye issues, and sleep issues.
• Based on data from the National Survey of Children’s Health, most teenagers (aged 12–17 years) with mental, behavioral, or developmental disorders did not receive the recommended transition planning to prepare for the move from pediatric to adult health care.
  • Only about 1 in 6 teenagers received the recommended transition planning.
  • Teenagers with developmental disorders were less likely than teenagers without developmental disorders to get the recommended transition planning.
• The American Academy of Pediatrics offers healthcare information for families of children with Down syndrome that focuses on health needs of individuals aged 13 to 21 years.

It is important for children, teens, and young adults—including those with Down syndrome—to get early healthcare transition planning. Developing a plan before adulthood helps young adults with Down syndrome get specialized care across their lifespan.

With every pregnancy, a woman starts out with a 3% chance of having a baby with a birth defect, regardless of underlying health conditions or lifestyle factors. Many women with birth defects and other health conditions have healthy, uneventful pregnancies. However, women 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.

Heart Defects

• Heart defects are the most common heart problem for pregnant women. Pregnancy can put stress on the heart of women with some types of heart defects. With appropriate medical care and treatment before and during pregnancy, many women with heart defects can have a healthy pregnancy.
• CDC research shows that fewer than 1 in 4 women with heart defects receives American Heart Association-recommended care before becoming pregnant.
• CDC research found that, compared to women without heart defects, women with heart defects may have a higher risk for some pregnancy-related issues, such as
• • Anemia (when the number of healthy red blood cells in the body is too low)
  • Hemorrhage (loss of blood)
  • High blood pressure
• CDC research shows that, compared to nonpregnant women with heart defects, pregnant women with heart defects have more documented health issues, such as
  • Diabetes
  • Infectious diseases
  • Mental health issues
• CDC research also shows that women with heart defects are more likely to experience stillbirth or deliver their baby too early compared to women without heart defects.
• The Congenital Heart Public Health Consortium offers resources on preconception counseling for women with a congenital heart defect, planning a healthy pregnancy with a congenital heart defect, and parenting with a congenital heart defect.
• Women with heart defects who are considering having a baby should talk with their healthcare providers before becoming pregnant to discuss how the pregnancy might affect them or their baby, or both.

Spina Bifida

• Although spina bifida causes nerve damage that can affect sexual functioning, most people with spina bifida can have children.
• It is important that teens and adults with spina bifida talk with their healthcare providers about sexuality and sexual functioning, birth control options, and reproductive concerns.
• The Spina Bifida Association offers resources on fertility, sexuality, and preventive care for people with spina bifida.

Recurrence Prevention

• CDC research found that women who had a past pregnancy affected by a neural tube defect (birth defect of the brain and spine) have an increased risk for having another pregnancy affected by a neural tube defect. If you’ve had a baby with a neural tube defect, talk with your healthcare provider or a genetic counselor about the chance of having another pregnancy affected by a neural tube defect. They can give you specific prevention steps that you can take.
• All women of reproductive age should get 400 micrograms (mcg) of folic acid each day, in addition to consuming food with folate from a varied diet, to help prevent neural tube defects. Follow your healthcare provider’s recommendations if you’ve had a past pregnancy affected by neural tube defect. For example, if you have had a previous pregnancy or child affected by spina bifida or anencephaly, your healthcare provider might recommend that you take a higher-than-normal dose of folic acid before and during pregnancy.

Genetics and Family History

Some birth defects, such as Down syndrome, are caused by changes in genes. Having someone in your family with a birth defect increases your own chances of having a baby with a birth defect. To learn more about your genetic risk of having a baby with a birth defect, you can talk with a clinical geneticist or a genetic counselor.

• Parents with heart defects are more likely to have children with heart defects. A baby born to a family without a close relative with a heart defect has about a 1% chance of having a heart defect. However, this risk is three times higher in a family in which the mother, father, or sibling has a heart defect.
• Based on your personal and family health history, your healthcare provider can refer you for genetic counseling:
  • Planning for Pregnancy: Genetic counseling before you become pregnant can address concerns about factors that might affect your baby. These include genetic conditions that run in your family or your partner’s family, history of stillbirth, and a previous pregnancy or child affected by a birth defect or genetic condition.
  • During Pregnancy: Genetic counseling while you are pregnant can address certain tests done during your pregnancy. Counseling also gives you a chance to discuss any detected problems or conditions that might affect your baby during infancy or childhood.