When Michael Ballam and his wife went to see their OB-GYN on Christmas Eve 15 years ago, they were only expecting to hear routine information regarding their unborn son.
And for a little while, it seemed like it was going to be that way.
The doctor told them their son, whom they had named Benjamin, had five fingers on each hand, five toes on each foot, and had all of his internal organs in good condition. Everything looked OK.
"But then the doctor started to zoom in on Benjamin's spine and with a look of concern, he wrote two words on the screen that I will never forget," Ballam said.
Spina bifida.
"And those two words have altered my life ever since," Ballam said.
Ballam, a Logan native, shared the challenges that come with a child with spina bifida at a conference Saturday at the University of Utah. The conference focused on families with children who have birth defects.
Ballam, a music professor at Utah State University, also performed.
After being told his son was going to be born with spina bifida, Ballam did not try to find information about the condition. Instead, he opted for another diagnosis — but it remained the same.
"I guess I didn't want to hear anything else about it so I blocked it all out," Ballam said.
But Ballam's situation is not uncommon. One in 30 babies in Utah is affected by a birth defect. A total of 1,400 babies with birth defects were counted in 2005, about one baby with a defect being born every 3.5 minutes.
According to Marcia Feldkamp, director of the Utah Birth Defect Network, birth defects are the leading cause of death for babies under 12 months. Having a child with a defect can change that family's perception, Feldkamp said.
"When you're a parent of a child with a birth defect, you see your child as a person, not as someone with a disability," Feldkamp said. "So you're in a small club because the rest of the world sees them as the latter."
In order to bring the world into that small club, Ballam said, parents as well as the public must seek information about children with disabilities.
"Gather all the information you can," he said. "It's the only way you will understand what they are going through."
Now 15, Benjamin has undergone 20 different surgeries. The latest repaired the titanium rods from his spine that had pierced through his skin. He was in the hospital for 37 days.
But not all parents with children with disabilities know what to expect when their child is diagnosed. Creating programs to spread awareness is the key to educating them, Feldkamp said.
"Those programs require state-level funding, and that's what we're hoping to get," Feldkamp said.
Gov. Jon Huntsman Jr.'s 2008 budget includes $363,487 ongoing and $173,000 supplement funds for the Utah Birth Defect Network. By receiving more funds, Feldkamp hopes to increase the number of healthy babies in the state and start education and outreach programs to help families with children with birth defects.
"But once you have that information, put it away sometimes," Ballam said. "It can become a burden, so instead try to rejoice each day with your child."
E-MAIL: abreton@desnews.com