She also has significant hearing loss.

The Turners were relieved to get a diagnosis, but they didn't learn much at first. Most of what they were told back then was grim —"She'll die by age 6 and other awful things. We're finding out that's not always the case. There's quite a range," says Leila Turner. "One man (with CdLS ) in Utah is in his 50s."

Erin and Bryce Barnett, of Pleasant Grove, learned when Maeve was two days old that she had CdLS, but they'd known midway through the pregnancy that something was different. An ultrasound showed the baby was very small, and subsequent tests found she was not following normal growth rates. An amniocentesis ruled out some of the more common genetic problems.

At 32 weeks, the baby was in trouble, and they delivered her. She had a tiny chin and six fingers on one hand, three on the other. Her upper lip was very small, and she had the characteristic arched eyebrows and small hands and head. She also had a cleft palate but not a cleft lip. And she was tiny, 1 pound 5 ounces.

In the neonatal intensive care unit, she had severe reflux and developed pneumonia several times from aspirating. She was growing, but slowly. When she was 3 months old, she was moved from Utah Valley Regional Medical Center to Primary Children's, where she had heart surgery. She was still too small for surgery to minimize the reflux. Then she went back to Utah Valley, because she was doing better and it was closer to home. She was doing so well they were planning to send her home, but a bowel problem developed and "she went downhill completely," her mom says. She died 18 months ago.

Her brother, Isaac, is now 2 months old. He is perfectly healthy and, in fact, having one child with CdLS doesn't significantly increase the risk that another child will be born with the genetic syndrome.

Of the three girls in this story, Karli Humphrey is the most mildly affected by CdLS.

When she was born, mom Julie Humphrey of Roy "had a feeling something was not quite right. She was small. She was a cute baby, but she looked different. I couldn't pinpoint anything, though."

Typical of CdLS, she had a hard time eating. She developed more slowly than Humphrey's 3-year old had. When at age 1 she wasn't hitting milestones well, she had tests at Primary, but they were "pretty much inconclusive."

A neurologist there suspected CdLS and recommended they consult a genetic specialist. But they didn't have insurance and opted, temporarily, to see if she was a late bloomer. After all, she was developing new skills, walking and starting to talk "but always delayed."