The 25th Anniversary of the Texas Birth Defects Registry: Looking Back at the Beginning of Data Gathering to Prevent Birth Defects
Congratulations, you’re pregnant! Reality starts to diminish the early glow of pregnancy as your doctor recommends a dizzying list of prenatal screening tests. With trepidation, you agree to the tests.
What happens if those test show your baby has a birth defect? Parents faced with the worst news of their life ask, “Why my child?” Twenty-five years ago, before there was a Birth Defects Registry, there were no answers. Doctors could give the parents information about how to deal with a disability or recommend palliative care, but there were few answers. And there was little to prevent this from happening to other families in the community. Today, the Texas Birth Defects Registry gathers data to help answer “why.” Researchers use that data to find causes and prevent birth defects.
Palliative care is specialized medical care focused on providing relief from symptoms and stress of a serious illness or birth defect. The goal is to improve quality of life for both the patient and the family.
Carmen Rocco, MD, remembers the cluster of babies born with anencephaly in 1990-1991. Rocco was a physician at Brownsville Community Health Center. “I was caught in the middle of one of the scariest adverse health outcomes in my community, Dr. Rocco said. “Before the cluster started its mysterious downward trend, we had seen over 30 cases of anencephaly and spina bifida in an 18-month period. Scientific communities that follow these defects, would describe it as one of the largest clusters in medical history.”
There was no Texas Birth Defects Registry. People called the Texas Department of Health (now Texas Department of State Health Services, DSHS). Dennis Perrotta, PhD, state Epidemiologist, got a call from a nurse. “How many cases of these birth defects should we expect?” she asked.
Anencephaly and spina bifida are severe birth defects where a hollow structure (neural tube), from which the brain and spinal cord form, does not fuse in early pregnancy. 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.
Dr. Perrotta and DSHS staff spent years trying to answer that question and figure out if there was a higher incidence of birth defects in the Rio Grande Valley. “Families had questions and were calling us on a regular basis about birth defects in their neighborhood,” said Perrotta. Gathering data from birth certificates was slow, hard work. “At that time, we had no organized way to take a look at birth certificates, death certificates, doctors’ offices – no way to get the information quickly to see if rates are normal or higher than normal,” said Perrotta. Birth and death certificates weren’t always accurately filled out to indicate a birth defect.
Meanwhile, the Brownsville, Texas, community worked to get funding for their own study. They had to comb many inconsistent records and other hospital information. The information was sometimes unreliable.
DSHS finally had enough data to confirm a high rate of anencephaly, spina bifida and other birth defects in the area. With the help of a grant from The Centers for Disease Control and Prevention (CDC), they worked to find out why.
But the information gathering process had been long and difficult. DSHS needed a way to gather information reliably, so that they could respond quickly when birth defects clusters were found. DSHS needed an active surveillance system. Authority and funding to make that possible would require support from the Texas Legislature.
Active Surveillance is used when there is indication that something unusual is happening. The health department actively looks for cases by examining medical records and calling health care providers or laboratories and requesting information about the birth defect or disease. While this method costs more and is labor intensive, it tends to provide a more complete estimate of frequency.
The DSHS presented Senate Bill 89 to the Texas Legislature in 1993. People who knew the devastating impact of birth defects advocated for the Bill: Anne Andis, mother of a baby girl with anencephaly; Kevin Brady, state representative; Melanie Lockhart, Executive Director of the Central Texas Chapter of the March of Dimes; and many others. Heightened media interest helped drive the Bill forward.
In May 1993, the Birth Defects Act passed the Legislature. In June, Governor Ann Richards signed the Birth Defects Act into law. Both Andis and Dr. Perrotta still treasure the pens used to sign it. In September, the Birth Defects Act went into effect. Division offices opened in March 1994 and data collection began in December. Since 1994, the Birth Defects registry has collected 360,000 cases.
Dr. Perrotta says the Texas Birth Defects Registry is “what makes me proudest from my 29 years of public health experience. Our Registry is one of the finest birth defect registries in the country. In some cases, it’s known in international circles.”
“I use the Registry, and I am so incredulous of the amount of information that is in the Registry,” said Rocco “It is so reliable, so accessible and so important in monitoring birth defects in any community.”
Gathering all Texas birth defects data into one place is an important tool. It lets researchers investigate the “why” of birth defects. Finding a pattern leads to prevention that saves babies' lives.
“Reporting is essential, and accuracy is as important,” said Paula Gomez, Director of the Brownsville Community Health Center. “It can lead to interventions that may prevent things in the future.”
“Thanks to birth defects surveillance and research, we now know that taking folic acid before and during early pregnancy can help prevent neural tube defects,” Lockhart said.
For 25 years, the information gathered in the Texas Birth Defects Registry has contributed to research, improved health, and saved lives. “The Registry makes what happened to those babies count,” Andis said.