Since its launch in 1995, the agency has tracked birth defects with the help of funding from the Centers for Disease Control and Prevention. The CDC now expects the state to pick up the tab, network director Marcia Feldkamp said.

The network's request made its way into Gov. Jon Huntsman Jr.'s health budget, albeit at $352,000 rather than the $420,000 requested.

Network officials still hope to get the full amount but appreciate the governor's support, Feldkamp said.

"Without that funding, we cannot continue surveillance, and without surveillance, we can't do research," she said. "That's critical to understanding how we can prevent [birth defects] from happening in the first place."

The network tallies major birth defects for all births in Utah and uses the data to spot trends and clusters. The data are startling:

l Birth defects are the leading cause of infant mortality.

l One of every 50 Utah babies is born with a major birth defect that is tracked by the network. The rate is much higher - estimated at one in 33 - when all birth defects are included.

l By the end of this year, more than 1,000 babies are expected to be born with a birth defect. Of those, 350 could have a major heart defect, and 100 - a cleft lip or palate.

l Utah ranks highest in the nation for certain birth defects, such as cleft lip and palate.

Challey Smith hopes the network's surveillance some day yields more than statistics. The 29-year-old Draper woman wants answers to why her young son was born with spina bifida.

"You feel enormous guilt," she said. "I think the more information and studying that we do, the more answers we're going to get and the healthier babies are going to get."

She feels blessed that Stratton, her 2-year-old, seems to have a mild case of spina bifida. He has full use of his arms and legs and loves climbing on things, like any other toddler.

That's a much rosier outcome than Smith and her husband prepared themselves for when an ultrasound delivered the devastating news halfway through her pregnancy. Even so, Smith and her husband won't know the extent of Stratton's condition until he is older.

In the meantime, they work to raise awareness about the importance of research and education on birth defects.

The birth defect network also offers education campaigns, on issues such as folic acid's preventative powers against neural tube defects, including spina bifida and anencephaly.

The agency has reached out to women who are more at risk of having babies with neural tube defects, including low-income women and women who already have had a baby with a neural tube defect. They're at much higher risk of having another.

"We want to make sure they're aware that they need to take a much higher dosage of folic acid whether they're planning on becoming pregnant or not," Feldkamp said.

In addition to monitoring birth defects in Utah, the network is beginning to study quality of life of children with birth defects and their families.

"Most kids that are born with birth defects actually survive and can survive many, many years," said Lorenzo Botto, a medical epidemiologist at the network. "We've got this population of kids and families with this condition whose quality of life we don't know much about."

Examining quality of life could yield information that will inform future policymaking, state spending and families' strategies for coping with a given birth defect.

For example, babies born with a cleft lip and palate survive, but they often struggle with poor speech, hearing loss and social stigmatization as they grow up.

With that knowledge, policymakers and families can invest in speech evaluation and therapy, Botto said.

And in the long run, he said, the entire health care system could benefit from a better understanding of the causes and the impacts of birth defects, he said.

"If we can improve survival, if we can improve quality of life, that would be the No. 1 potential help in the health care costs and quality."

rlynn@sltrib.com

Utah's rates for the most common birth defects:

Neural tube defects

(includes spina bifida, anencephaly and encephalocele)

1 in 450

Orofacial clefts

(includes cleft lip and cleft palate)

1 in 159

Congenital heart defects

(major defects only)

Source: Utah Birth Defect Network. Data reflects births from the mid-1990s through 2003.

For more information about the Utah Birth Defect Network, visit http://health.utah.gov/birthdefect.

Discussing birth defects

* What: March of Dimes conference on birth defects, ''Birth Defects, a Lifetime Journey for Children and Families''

* Who: Families, caregivers and health professionals dealing with a child with birth defects

* When: 1 p.m. to 5 p.m., Jan. 21

* Where: Spencer F. and Cleone P. Eccles Health Sciences Education Building, University of Utah

* Registration: Register online at http://health.utah.gov/birthdefect after Jan. 3.