Robyn Ott, 26, didn't really feel different about herself until she saw the way she walked in a reflection of a window at high school.
"It really hit me," Ott said Saturday while at a first-ever conference on birth defects held at the University of Utah.
Ott, who was born with spina bifida, became more reserved, and her mom, Betty Sersland, noticed the change — her daughter wasn't as outgoing.
These days, Ott said, she's still getting past that defining moment in her life, one that has included more than 20 surgeries to help her walk. She wears braces on her lower legs, can't feel her feet and has various places on her legs that are also numb.
But Ott is as "tenacious" — her mother's word — as musician/composer Kurt Bestor's two daughters, Kristin, 24, and Erika, 17, who were born with spina bifida and, like Ott, have overcome more than most in life.
Bestor was invited to speak — play the piano and sing — by the March of Dimes and the Utah Birth Defect Network (UBDN), which sponsored the conference, "Birth Defects: A Lifelong Journey for Children and Families."
"I wouldn't trade it for the world," Bestor said of his family's own journey with birth defects.
In between musical numbers that were relevant to the conference, Bestor offered anecdotes that illustrated how his daughters overcame the "stares" and, literally, stairs — at Kristin's prom, for example, four boys carried her wheelchair down a flight of stairs.
As keynote speaker, Bestor talked about friends and professionals who became part of an extended family of support and how humor has helped. He calls his girls "crutchkins."
"I think it's good to face it and laugh about it," he said with his daughters sitting in an audience of about 100.
"Our journey is still going," he added.
Bestor's children factor into statistics that show how every year more than 1,400 infants in Utah are born with a birth defect — with one of the highest birth rates in the nation, that works out to one baby every six hours born with a defect.
Orofacial clefts, or cleft lip, is the most common birth defect in the United States, affecting about 6,800 infants each year, according to recent figures from the Centers for Disease Control and Prevention.
CDC statistics show that about 3 percent of babies born in the United States each year are affected by a major birth defect of some kind. Down syndrome reportedly has the second highest prevalence, with 5,500 infants affected annually.
The CDC gathered its information on birth defects from 11 states, including Utah, that provided data from 1999-2001 as part of the National Birth Defects Prevention Network. The data comes from hospital records that identify babies who were born with at least one of 18 major birth defects.
Utah is in danger of losing its own defects reporting network if the 2006 Legislature does not come up with more funding. Without state support, the UBDN could lose access to about $1 million in federal funds, according to Steve McDonald, program services director for March of Dimes.
McDonald said prevention efforts regarding birth defects have resulted in $20 million saved in health-care costs in Utah over the past 10 years.
The CDC points out that not all birth defects can be prevented, but that a woman can take certain steps to increase her chance of having a healthy baby. For more information, go to www.cdc.gov/ncbddd/bd/abc.htm for pregnancy tips from A to Z.
Workshop set
The National Multiple Sclerosis Society Utah State Chapter will hold a couple's workshop Feb. 8-10 at sites in Ogden, Salt Lake City and Provo. The workshop is intended to teach couples how to approach MS as a team. For more information, call 801-493-0113 or log on to www.fightmsutah.org.
E-mail: sspeckman@desnews.com