Birth defects have been a large part of Betty Mekdeci’s life for nearly four decades now. In 1975, she gave birth to a son with birth defects some experts believe were caused by a morning-sickness medication she took during pregnancy, Bendectin. (Much, much more on this later.)
Since then, she and her husband Mike have been active in the fight to research birth defects, identify their causes and do what’s possible to prevent them. They also use their organization, Birth Defect Research for Children, to link parents of affected children with other parents who understand their struggles.
In a recent conversation, Betty said she knows what it’s like to be a parent in the dark about an ailment affecting one’s child.
“We think a family needs to know all there is to know about your child’s birth defect,” she said. “It used to be you couldn’t figure out anything.”
Looking for Patterns
Betty said her work with Bendictin taught her that there are often patterns in the occurrence of birth defects that can be spotted if you know where to look.
“If you collect enough data, you could analyze it and you could quickly see if there was a pattern,” she said. “If there was a distinctive pattern that was observed by researchers, then they would do the more highly controlled studies.”
The organization does this through what is called the National Birth Defect Registry, which she described as the organization’s proudest accomplishment. There is no other database like it in the world, she said.
“We have been able to do some remarkable things with it,” Betty said.
The Mekdeci’s successes didn’t end when Bendectin, the drug that likely harmed their son David, was taken off the market in 1982.
Later that decade, they helped identify birth defects linked to Agent Orange exposure in the Vietnam War. More recently, they linked the occurrence of Goldenhar syndrome, a rare congenital defect that causes facial deformities, to service in the Persian Gulf War in the early 1990s.
The Defense Department, initially skeptical, later verified these findings, Betty said.
She said she’s particularly proud of the work the organization has done linking paternal exposure to birth defects. This research is far less common than studying what a child is exposed to in utero through the mother.
If the registry has the biggest impact on the broader fight against birth defects, the organization’s Parent Matching Project plays the biggest role in the day-to-day lives of families affected by defects.
It doesn’t just link a parent of a child born with, say, a cleft lip with the parent of a similar child. Because birth defects often come in tandem with one another, the program can link up the three birth defects. This means, Betty offered as an example, that a parent whose child was born with Down syndrome, leukemia and a heart defect can find a family also dealing with the combined effects of all three ailments.
“That’s been very, very popular,” Betty said.
Betty’s history with birth defects is a tale worthy of a book. It began with a drug during pregnancy that affected her son. Her crusade to get Bendectin off the market took her to courtrooms and government hearings.
Now, decades later, the drug that changed her life is back on the market under a different name. A self-described “feisty” woman unafraid of a fight, Betty is sounding the alarm.
Keep an eye on the Oshman & Mirisola blog for more on this in an upcoming post.