Birth defects are a significant health concern that can affect families everywhere, including the African American community. 1 in 32 babies is born with a birth defect, according to the Cleveland Clinic. These conditions, present from birth, can change the shape or function of one or more body parts. They can cause problems in overall health, the development of the body, or its functioning. Understanding birth defects, risk factors, and available support is crucial for families and communities. In this article, we will explore birth defects in the African American community and highlight some supportive resources and organizations.

What are Birth Defects?

Birth defects are health conditions present at birth. They can cause changes in the shape or function of the body, leading to challenges in health, development, or both. These defects can range from mild to severe and may affect various parts of the body. Some common examples include clubfoot, fetal alcohol syndrome, heart defects, cleft lip or palate, gastroschisis, and Down syndrome. They account for 14% of stillbirths.

Birth Defects in the African American Community

Studies have shown that certain birth defects are more common in the African American community. For example, sickle cell anemia, a blood disorder, is more prevalent among African Americans. Understanding these risks is vital for early intervention and treatment. Other conditions are less common in the African American community, but can still occur. Gastroschisis is a serious birth defect that’s becoming more common. Since the 1970s, the number of babies born with it has increased. Recent studies have found that this is happening more often in young mothers, especially those under the age of 24. Babies born to non-Hispanic Black moms usually have this less often than babies born to non-Hispanic white moms. But between 1995 and 2012, the number of these babies increased the most among non-Hispanic Black moms (Kirby, 2017).

How Do Birth Defects Happen?

One of the big challenges in understanding the risk of birth defects is that many factors can contribute to their development. These include genetics, the mother’s health during pregnancy, medications consumed during pregnancy, environmental factors, and lifestyle choices, including exposure to substances or chemicals. For some birth defects, the cause is unknown. This uncertainty makes it hard to predict who will be affected by birth defects and why.

Potential Signs and Symptoms of a Birth Defect

When discussing symptoms of a birth defect during pregnancy, it’s crucial to understand that most birth defects are detected through medical tests rather than through symptoms experienced by the mother. However, there are a few signs and situations during pregnancy that might indicate a higher risk of birth defects. Here are some key points to consider:

1. Abnormal Ultrasound Findings: Ultrasounds are a routine part of prenatal care and can sometimes reveal abnormalities in the baby’s development, which may suggest a birth defect.
2. Positive Results from Prenatal Screening Tests: Prenatal screening tests like blood tests and specialized ultrasounds can indicate an increased risk of birth defects. These tests typically measure the risk level rather than directly diagnosing a birth defect.
3. Maternal Health Issues: Certain health conditions in the mother, such as diabetes (especially if not well-controlled), infections during pregnancy, or a history of exposure to harmful substances, can increase the risk of birth defects in the baby.
4. Medication and Substance Exposure: If a woman takes certain medications, consumes alcohol, or uses drugs during pregnancy, this can elevate the risk of birth defects in the fetus.
5. Family History of Birth Defects: A family history of certain genetic conditions or birth defects can sometimes increase the likelihood of similar issues in the baby.
6. Symptoms in Mother Indicative of Fetal Issues: In rare cases, a mother might experience symptoms that indirectly suggest fetal complications, such as abnormal maternal weight gain or decreased fetal movement, which can prompt further investigations.

It’s important to note that the presence of these factors does not guarantee a birth defect but may prompt additional monitoring or testing. Regular prenatal care and consultations with healthcare providers are essential for assessing and mitigating potential risks to the baby. If a woman has concerns about the risk of birth defects, it is advisable to discuss them with her healthcare provider for appropriate guidance and testing.

Support and Resources for Birth Defects

Dealing with birth defects can be challenging for families. However, many support groups and organizations can help. These resources offer information, support, and connections to families facing similar challenges.

1. March of Dimes: This organization works to improve the health of mothers and babies. They provide resources and support for families affected by birth defects.
2. Sickle Cell Disease Association of America (SCDAA): This organization focuses on sickle cell disease, a common genetic disorder affecting African Americans. They offer education, advocacy, and support.
3. National Birth Defects Prevention Network (NBDPN): This network provides information on birth defect prevention and offers resources for families and healthcare professionals.
4. Local Community Health Centers: Many communities have health centers that provide support and resources for families affected by birth defects.

Self-Advocacy: Protecting Yourself and Your Baby During Pregnancy

When it comes to your pregnancy, you are your baby’s first line of defense. Self-advocacy means speaking up, staying informed, and making sure your voice is heard in every appointment and decision. Here’s how you can take charge of your care and reduce your risk of complications or undetected birth defects.

1️⃣ Ask About Prenatal Screenings Early

Prenatal screenings can detect many birth defects and health risks early — but they’re not always offered automatically. Ask your provider about:

• The types of screenings available (ultrasound, blood tests, genetic testing)
• The best time to get them during your pregnancy
• What results mean and what follow-up steps you should take

Tip: Write down questions before appointments, and don’t hesitate to ask for explanations in plain language. You deserve to fully understand your care plan.

2️⃣ Share Your Complete Health and Family History

Conditions like diabetes, hypertension, or genetic disorders such as sickle cell anemia can increase risk. Be open about:

• Your personal and family medical history
• Any medications or supplements you’re taking
• Any exposure to chemicals or substances at work or at home

This helps your provider personalize your care — and identify risks that might otherwise go unnoticed.

3️⃣ Request Specialist Referrals if Needed

If you have a high-risk pregnancy or abnormal test results, you can ask for a maternal-fetal medicine specialist (a doctor who focuses on complex pregnancies). Specialists can order additional tests, provide second opinions, and guide you through treatment options.

4️⃣ Advocate for Safe Medication Use

Always ask before starting, stopping, or changing medications — including over-the-counter drugs or herbal supplements. Ask your doctor or pharmacist:

• “Is this safe during pregnancy?”
• “Are there safer alternatives?”
• “What are the risks if I stop or continue?”

5️⃣ Partner with Your Provider, Don’t Be Afraid to Speak Up

If something doesn’t feel right — whether it’s pain, swelling, or just an instinct — say something. Black women are too often dismissed in medical spaces. Trust your intuition and request additional testing or second opinions if needed.

Example phrase: “I’m concerned about this symptom, and I’d like to make sure it’s not something serious. Can we check it out today?”

6️⃣ Build Your Support Network

Self-advocacy isn’t a solo act. Surround yourself with support systems that empower you:

• A birth partner or family member who attends appointments and helps take notes
• A community health worker, doula, or patient advocate
• Organizations like the March of Dimes or the Sickle Cell Disease Association of America that offer education and emotional support

7️⃣ Know Your Rights

You have the right to:

• Receive respectful, bias-free care
• Ask questions until you understand
• Access your medical records
• Get a second opinion

If your provider dismisses your concerns, it’s okay to find one who listens. Your health — and your baby’s — depends on it.

Bottom Line

Advocacy is about empowerment. By asking questions, understanding your risks, and building a trusted care team, you protect both yourself and your baby. Every question you ask, every appointment you attend, and every decision you make is an act of love — and power.

Prevention and Care

While not all birth defects can be prevented, some can be reduced through healthy lifestyle choices and medical care during pregnancy. Regular medical check-ups, a balanced diet, and avoiding harmful substances are key preventive measures. For families affected by birth defects, early intervention and treatment can make a big difference in the child’s quality of life.

Conclusion

Birth defects in the African American community are a complex issue. While understanding the risks can be challenging, knowing the available support and resources can empower families. By staying informed and connected, families can navigate the challenges of birth defects with hope and support.

Sources:

(n.d.). Birth Defects. The Cleveland Clinic. Retrieved January 14, 2024, from https://my.clevelandclinic.org/health/diseases/12230-birth-defects

Matoba, N., & Collins, J. W., Jr (2017). Racial disparity in infant mortality. Seminars in perinatology, 41(6), 354–359. https://doi.org/10.1053/j.semperi.2017.07.003

(2011). Most Stillbirths Caused by Placental, Pregnancy Conditions. National Institute of Health. https://www.nih.gov/news-events/nih-research-matters/most-stillbirths-caused-placental-pregnancy-conditions