World Birth Defects Day

March 3 is World Birth Defects Day. Join us in our effort to raise awareness of birth defects, their causes, and their impact around the world! Our theme is “Many birth defects, one voice.”

Every year, about 3-6% of infants worldwide are born with a serious birth defect. This means that life-altering conditions like spina bifida and congenital heart defects affect millions of babies and families. Birth defects can affect babies regardless of where they are born, their socioeconomic status, or their race or ethnicity.

Tunu’s Story

Tunu smiling

Meet Tunu. She lives in Nairobi with her family. Tunu is a vibrant 1-year-old who loves to smile, listen to music, and play with her toys. She was born with bilateral clubfoot resulting from a rare condition called arthrogryposis.

Tunu’s mother, Esther, and her family found out about Tunu’s condition at birth. Doctors did not detect any problems during Esther’s pregnancy scans. After Tunu was born, her family experienced a range of emotions—surprise, grief, disbelief, love. Committed to getting Tunu the care that she urgently needed and unsure of where to turn for information, Esther followed her doctors’ guidance to put casts on Tunu’s legs to help treat her clubfoot. When Tunu was about 9 months old, Esther took her to a specialty care clinic. There, specialists told her that Tunu’s legs were in bad shape. They needed to start the casting process all over again. It was at that moment that Esther realized that, in Kenya, there is no standardized treatment for clubfoot—different doctors treat it differently.

Through her experience of making sure that Tunu got the care she needed, Esther recognized an information gap about birth defects in her country. She decided to take action and began “The Bold One Out” campaign to raise awareness about birth defects in her community and help other families who may have children born with birth defects. Through this campaign, Esther shares birth defects information and lets other families know that resources and care are locally available. Even more, Esther fights the stigma about birth defects head-on.

“It’s real. Some moms don’t even take their babies to the hospital because they feel they’ll be ostracized by society. They choose to keep them home. Those are the ones I want to reach out to,” Esther explains. “Children are born with birth defects, but for many, they are correctable. There is just a lack of awareness and a need for sensitization to the public about what can be done to help those affected.”

The Bold One Out campaign addresses the flawed perception that children born with a birth defect are lesser than. Esther wants to change that narrative. She explains, “The Bold One Out is a movement of extraordinary mothers raising little angels with extraordinary conditions for an extraordinary purpose.” She continues, “The journey is long. We need to encourage these mothers to take the bold step for their extraordinary children. Just because Tunu has an issue with her foot, it does not define her wholly. She is still well able to accomplish that which she has been put here on earth to do.”

Even more, Esther is fighting for inclusivity. She wants people to see past the condition and appreciate the person fully. Through her campaign, Esther aims to: 1) raise awareness of birth defects and their prevention, 2) improve early detection of these conditions, and 3) increase early treatment and timely interventions.

The Bold One Out is part of Esther’s charity, Tunu Afrika named after her daughter. Esther says that “Tunu” is a Swahili word meaning a treasured gift. This World Birth Defects Day and beyond, Esther continues to raise awareness of birth defects and remove barriers to treatment and care in her community. She does it for Tunu and the many other treasures so that they can fulfill their extraordinary purposes.

CDC thanks Esther and Tunu for sharing their personal story.

A baby lying in bed

Birth Defects Tracking and Research

Accurately tracking birth defects and analyzing the collected data is a first step in preventing birth defects.

CDC uses tracking and research to

  • Identify causes of birth defects;
  • Find opportunities to prevent them; and
  • Improve the health of those living with them.

Understanding the potential causes of birth defects can lead to recommendations, policies, and services to help prevent them.

Importance of Birth Defects Tracking and Research

CDC has created birth defects tracking and research systems in the United States and around the world that help to identify the causes and long-term effects of some birth defects.

Learning from the Zika virus outbreak

Birth defects can be the first sign that an emerging infection causes serious harm. The 2016 Zika virus outbreak demonstrated the need to rapidly collect data for public health action. Along with state, local, and territorial health departments, CDC collected information about Zika’s impact during pregnancy on mothers and babies. CDC has also worked with partners around the world to help better understand the impact of Zika during pregnancy. Although CDC is continuing to follow infants affected by Zika, CDC is applying the lessons learned from the 2016 Zika virus outbreak to other emerging threats to mothers and babies, like syphilis or hepatitis C infection during pregnancy.

Preventing some birth defects with folic acid

If a woman has enough folic acid, a B vitamin, in her body before and during pregnancy, it can help prevent major birth defects of the baby’s brain and spine, called neural tube defects. CDC recommends that women of reproductive age get 400 micrograms of folic acid each day to help prevent neural tube defects.

Through birth defects tracking and research, scientists found that Hispanic/Latina women are most likely to have a child affected by a birth defect of the brain and spine.1 In 2016, the U.S. Food and Drug Administration approved a petition to allow folic acid to be added to corn masa flour to help more women in the United States get the recommended daily value of 400 micrograms of folic acid.

Participate in World Birth Defects Day

Each year on March 3, NCBDDD partners with more than 120 organizations around the world to raise awareness of birth defects for World Birth Defects Dayexternal icon.

Together, we aim to raise awareness about the impact of birth defects, as well as increase opportunities for prevention of birth defects by promoting the importance of birth defects monitoring programs and research to identify the causes of birth defects.

You can download the graphic images below and use example social media postsexternal icon on your social media platforms to raise awareness about World Birth Defects Day.

Woman holding the why I care about birth defects prevention sign

This year, we are also encouraging people to download and print this sign pdf icon[140KB / 1 page], fill it out with why they care about birth defects research and prevention, and post a picture of themselves holding it on March 3!

Why do you care about birth defects research and prevention?

Be sure to use the hashtags #WorldBDDay and #ManyBirthDefects1Voice to be a part of the conversation.

References
  1. Centers for Disease Control and Prevention, Racial/ethnic differences in the birth prevalence of spina bifida – United States, 1995-2005. MMWR Morb Mortal Wkly Rep, 2009. 57(53): p. 1409-13.