Birth defects, otherwise known as congenital anomalies, are structural changes present at birth that can affect almost any part(s) of the body (e.g., heart, brain, foot). They may affect how the body looks, works, or both, and can vary from mild to severe. Some of these conditions can be treated with medication and interventions like surgery. However, others are life-long and significantly life altering.
In the United States, a baby is born with a birth defect every 4.5 minutes – about 120,000 babies each year – with around 1,050 cases occurring in Kansas every year. Approximately 50 of those are born with a significant birth defect. For more information on the statistics of specific birth defects in the United States, visit Data and Statistics on Birth Defects | CDC.
Causes
Birth defects can occur during any stage of pregnancy. Most of which are within the first trimester, when babies’ organs are forming. However, some defects do not develop until later in pregnancy, as organs are growing.
Researchers and medical professionals have spent decades investigating the cause of birth defects. For many, the causes are unknown. Genetics, behavior, and environmental all factors that play a role in development.
A combination of these factors, certain behaviors, and medications conditions can greatly increase the risk of birth defects developing during pregnancy. For more information on common causes and risk factors associated with birth defects, visit:
For fact sheets and additional resources on specific pregnancy and breastfeeding exposures, visit:
Diagnosis
Many birth defects are diagnosed during pregnancy or shortly after the baby is born, depending on the type of birth defect. Some birth defects are easily identified, such as limb reduction, polydactyly, or cleft lip. Defects of the heart, urinary system, and hearing are not as easily identified and are found using tests, such as echocardiograms, ultrasound, x-rays, or hearing tests. For more information on testing and diagnosing birth defects, visit:
Prevention
Not all birth defects can be prevented or detected early. However, there are healthy steps to reduce the risk. One of the first steps to take is talking to one’s doctor about any current medical conditions and medications. Additional steps to take to increase the chance of having a healthy baby:
- Make regular visits to a healthcare provider and start prenatal care.
- A healthy diet. Take 400 micrograms (mcg) of folic acid(folate) every day, beginning up to one month before becoming pregnant.
- Avoid drinking alcohol and smoking.
- Speak to a healthcare provider if taking or planning to take medications, including over the counter (OTC) medications. Do not stop or start taking medications without first talking to a doctor. Some conditions, like diabetes, increase the risk of birth defects.
- Know how to prevent and treat infections during pregnancy and be proactive when treating fevers.
Living with Birth Defects
Early intervention is essential to creating the best possible outcomes for babies with birth defects. State birth defects tracking programs exist to help identify and refer children for services and specialized care as early as possible. Geneticists, genetic counselors, and other specialists are great resources, along with family doctors or pediatricians.
Many families have learned to treat and manage birth defects and their related health outcomes. While babies born with birth defects often need special care and medical treatments to survive and develop, many resources for care and support are available.
For more information on living with birth defects, click the links below.
State offered services:
- Special Health Care Needs | KDHE
- Kansas Early Childhood Developmental Services | KDHE
- Kansas Children’s Service League, Inc.
Kansas resources:
- Kansas Down Syndrome Medical Care Centers | Global Down Syndrome Foundation
- Kansas Infant Death & SIDS Network
- MISS Foundation | Support for Bereaved/Grieving Parents & Families
- Specialized Primary Care for Adults with Down Syndrome | The University of Kansas Health System
- Spina Bifida | Children’s Mercy Kansas City
Local support services:
- Cleft Lip and Palate Program | Children’s Mercy Kansas City
- Craniofacial Program | Children’s Mercy Kansas City
- Compassionate Friends | Supporting Families After a Child Dies
- Congenital Heart Defects Association
- Down Syndrome Clinic | Children’s Mercy Kansas City
- Down Syndrome Innovations
- Families Together, Inc. | Assisting Kansas Parents and Their Families
- GiGi’s Virtual Playhouse | Down Syndrome Achievement Center
- La Leche League of Kansas | Local Support Locator
- North Central Kansas Down Syndrome Society
- Northwest Kansas Down Syndrome Society
- Support Groups in Kansas
National resources:
- American Academy of Pediatrics
- American Cleft Palate-Craniofacial Association (ACPA)
- American College of Medical Genetics | ACMG
- American College of Obstetrics and Gynecology
- Down Syndrome Research Foundation | DSRF
- Healthfinder
- La Leche League
- March of Dimes
- National Association for Down Syndrome
- National Birth Defects Prevention Network | NBDPN
- National Down Syndrome Society | NDSS
- National Organization for Rare Disorders
- The North American AED (Antiepileptic Drug) Pregnancy Registry
- Spina Bifida Association
- International Clearinghouse for Birth Defects | Surveillance and Research
For more information:
- The Baby Blog – Understanding Pregnancy and Breastfeeding Exposures | MotherToBaby
- Fact Sheets – Pregnancy and Breastfeeding Exposures | MotherToBaby
- Learn about Congenital Heart Defects | CDC
- Learn about Specific Birth Defects | CDC
- Learn about Spina Bifida | CDC
- Pregnancy and Breastfeeding Exposures – MotherToBaby
- Podcasts Archive – MotherToBaby
Research, studies & reports:
- National Birth Defects Prevention Study
- Annual Reports – National Birth Defects Prevention Network | NBDPN
- Asthma Medication Use and Risk of Birth Defects: National Birth Defects Prevention Study, 1997–2011 – PMC (nih.gov)
- Maternal Genitourinary Infections and Risk of Birth Defects in the National Birth Defects Prevention Study | NIH.GOV
- Parental Age and Birth Defects: A Sibling Study | NIH.GOV
- Patterns of Multiple Congenital Anomalies in the National Birth Defect Prevention Study: Challenges and insights | NIH.GOV
- Asthma Medication Use and Risk of Birth Defects: National Birth Defects Prevention Study, 1997–2011 | NIH.GOV
- Maternal Exposure to SSRIs or SNRIs and the Risk of Congenital Abnormalities in Offspring: A Systematic Review and Meta-Analysis | NIH.GOV