"People view birth defects as very rare occurrences, but in fact 3% of all births in the U.S. are affected by a major birth defect," CDC epidemiologist Margaret Honein said. There were 4.022 million births in 2002.

The CDC report may help parents of affected babies find their way to advocacy organizations that can help them plan and learn what to expect, said Earl Seaver, president of the Cleft Palate Foundation, a nonprofit group that raises money to assist families and support research. Families of children born with facial clefts, some of which can be diagnosed prenatally, often need help lining up a team of surgeons, speech pathologists and other specialists, he said. "It's a difficult situation because some of these children are born in hospitals that see a cleft once a year or once every other year, and the staff isn't used to dealing with that," Seaver said. Families of affected kids can visit the foundation's Web site at www.cleftline.org or Smile's site at www.cleft.org for assistance.

Getting good advice: Diane Sprunt of Lewisburg, Pa., said she was fortunate because she had access to quality medical care when her six-year-old son, born with a deep cleft that left 40% of the roof of his mouth missing, needed two operations during his first year.
One each was performed in Portland, Ore. and Philadelphia. Sprunt first discovered her baby would be born with a cleft during an ultrasound at 14 weeks into her pregnancy and said her doctor advised her to terminate the pregnancy. Though the obstetrician "painted a grim picture of what life would be like," she said a family history with the problem led her to believe a good outcome was possible. "We quickly learned what we thought we knew before, which is it's quite a manageable birth defect." Still, feeding was tricky until her son's palate was repaired when he was nine months old, he needed braces at age five and tends to get ear infections, said Sprunt, 43. He had what they hope is his last surgery a few months ago and is otherwise a healthy kid with little cosmetic clue as to what befell him at birth, she said.
Seeing that cleft is the nation's most common birth defect gave her hope, Sprunt said. "I was actually heartened because one of the things my obstetrician told me over seven years ago was that people didn't want babies who weren't perfect."

Parents of children born with Down syndrome can face similar challenges and biases. The National Down Syndrome Society (NDSS,) a nonprofit group based in New York, offers advice to parents as well as health-care providers, NDSS spokesperson Suzanne Elliott Armstrong said.
"We have a new and expectant parent kit we send out free to anyone who calls with a lot of information about what life is like for people with Down syndrome," she said.