Mother speaks on what National Birth Defects Awareness Month means for her family
PHILADELPHIA (CBS) -- As January comes to a close, doctors say it's important to recognize National Birth Defects Awareness Month.
The March of Dimes says birth defects are the leading cause of infant death in the U.S. Those who survive often face challenges but many lead long and happy lives.
Amy DeSantis is the mother of 14-year-old twins. Her son, Quintino, was born with Down syndrome and a heart defect that was not detected during her pregnancy.
"You're shocked," she said. "The rollercoaster of emotions, everything from fear, grief, isolation, and then you kind of take a deep breath. You find an inner voice to kind of persevere and figure out how can you give your child the best life, the life that they deserve."
A woman starts out with a 3% chance of having a baby with a birth defect with every pregnancy, regardless of underlying health conditions or lifestyle factors, according to the March of Dimes.
"Birth defects are usually structural issues that arise usually in the first trimester. And they can be anything like a hole in the heart to a cleft lip or palate; one of the most common is also spina bifida, which is a neural tube defect," said Dr. Elizabeth Cherot, president and CEO of the March of Dimes.
While it's not known exactly what causes most birth defects, there are some things you can do before and during pregnancy to reduce the risk.
"You really wanna review your history with your provider," Dr. Cherot said. "You wanna get on a prenatal vitamin, specifically folic acid, even before you conceive, but as soon as you are pregnant as well to prevent those birth defects. And it's really important to stop any kind of smoking, alcohol or any illicit drugs."
DeSantis said Quintino has other chronic health issues, but he is thriving.
"He's grown into a 14-year-old, who does everything that his typical, peered sister does. He perseveres through all of these challenges and these milestones and he reaches 'em," she said. "He just does it in Tino time, we like to say."
She wants other families to know there are resources out there to help give children the best outcome.
One in 33 U.S. babies are affected by birth defects each year, according to the March of Dimes.