The 25th Anniversary of the Texas Birth Defects Registry: Making Birth Defects Count, a Mother’s Story
Anne Andis is a mother who knows firsthand the devastation of hearing, “Your baby has a birth defect.” In 1992, Andis was pregnant with a daughter. After her 20-week ultrasound, her doctor diagnosed a neural tube defect called anencephaly.
“Why my child?” Andis asked, grieving even as she carried her daughter to term. And yet, she will never regret the five wonderful days she spent with her baby girl. “She was beautiful,” Andis said. She wanted that beauty to count for something. “Grief can motivate you.”
|Anencephaly is a severe birth defect where a hollow structure (neural tube) from which the brain and spinal cord form, does not fuse in early pregnancy. This results in the baby developing without cerebral hemispheres, including the neocortex, which is responsible for cognition.|
Twenty-five years ago, before there was a Texas Birth Defects Registry, there were no answers. There was nothing doctors could do to extend the short life of a baby with anencephaly. There was nothing anyone could do to change or reverse the fatal birth defect.
Andis’ neighbors in The Woodlands, near Houston, Texas, heard about her daughter. And they too had stories to tell. They called to tell Andis about other babies in the area born with neural tube birth defects. Andis wrote each of these stories on an index card. The stack of cards grew to three inches thick. “I was grieving and wanted my daughter’s life to count,” Andis said. “I couldn’t walk away.”
Andis called the CDC to ask why they were not doing anything about birth defects in The Woodlands. She had been reading anything she could find on birth defects, so Andis knew about the cluster of anencephaly and the work to track birth defects in Brownsville, Texas. The CDC told Andis to call the Texas Department of Health (now Texas Department of State Health Services, DSHS). But the health department didn’t yet have a way to track birth defects.
Neural tube defects are birth defects where a hollow structure (neural tube), from which the brain and spinal cord form, does not fuse early in pregnancy. The two most common neural tube defects are spina bifida and anencephaly. In Anencephaly, this results in the baby developing without cerebral hemispheres, including the neocortex, which is responsible for cognition. In spina bifida, the backbone that protects the spinal cord doesn’t form and close as it should. This often results in damage to the spinal cord and nerves.
While state officials were working with state legislators in the Lower Rio Grande Valley, Andis turned to her state representative, Kevin Brady. “We need to investigate,” Andis said. “There are at least 30 other people in The Woodlands who have lost children to birth defects.” She also pointed to the birth defects in Brownsville, Texas. Brady agreed to help. Andis is still grateful. “What is important is how hard Kevin worked,” she said.
The hard work had only begun. Many people researched information needed to present their case to the Texas Legislature. DSHS staff wrote a Bill to ask the Texas Legislature for authority and funding to make a Texas Birth Defects Registry possible. Andis advocated for the Bill by telling her story. She talked about her daughter and shared her index cards. “It was a team effort,” Andis said. “Everyone was on the same page.”
In May 1993, the Birth Defects Act passed the Legislature. In June, Governor Ann Richards signed the Birth Defects Act into law. Andis still has a pen used to sign it. Even more, she treasures the memory of Governor Richards’ kindness. Andis said, “She gave me a big hug and said, ‘Anything we can do to protect our babies!’”
The Birth Defects Act went into effect in September 1993. Division offices opened in March 1994 and data collection began the following December. Today, the Texas Birth Defects Registry gathers data to help answer “why.” Researchers use that data to find causes and prevent birth defects. “The Registry makes what happened to those babies count,” Andis said.Read more of the story in “The 25th Anniversary of the Texas Birth Defects Registry: Looking Back at the Beginning of Data Gathering to Prevent Birth Defects.”