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 such as 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: An Update

Tunu smiling

Last year, we met Tunu. She lives in Nairobi with her family. Tunu is a vibrant 2-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.

Through her experience of making sure that Tunu got the care she needed, Esther, her mother,  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. 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.

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.”

When we caught up with Esther this year, she described how care and treatment for her daughter as well as for many other children have been affected by the COVID-19 pandemic. Treatment for Tunu’s clubfoot was impacted as care facilities were sometimes not accessible, with hospital visits becoming fewer and fewer. For many families, a weekly hospital visit was a big challenge; hospitals closed or were a high-risk exposure for families. During the pandemic, Kenya experienced a shut down, like many other parts of the world, and people often experienced challenges earning income. Unfortunately, this caused delays in treatment for children because they couldn’t get to the hospital or couldn’t afford the needed treatments.

At the hospitals themselves, many healthcare providers were working in shifts because of COVID-19. This meant that the children living with birth defects who were used to getting care consistently from the same provider were now being seen by a variety of providers. Parents would often have to retell the child’s medical history, and at times, providers had never seen or had experience treating these types of conditions.

Getting social support was also a challenge during the pandemic. Families lacked caregivers. Parents weren’t able to meet with each other for peer support. Children and families felt isolated.

Esther continues to use The Bold One Out to fight for inclusivity, especially after the past few years. 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. Esther emphasizes that these children are not “COVID babies.” Tunu is not a “clubfoot baby.” She’s a person first. She is strong. She can feed herself. She is capable. She’s a person first.

The Bold One Out is part of Esther’s charity, Tunu Afrika named for 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 treasured children so that they can fulfill their extraordinary purposes.

CDC thanks Esther and Tunu for sharing their personal story.

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. We aim to do this 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.

This year, we are also encouraging people to download and print this signexternal icon, fill it out with why birth defects matter to you, and post a picture holding it on March 3.

Birth Defects Matter printable sign - thumbnail

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.