John Hollenhorst Reporting
One of the darkest secrets of the Warren Jeffs polygamist community is coming to light. An especially severe birth-defect is on the rise, and, according to experts and former insiders, the cause is clear: Intermarriage among close relatives.
The condition called Fumarase Deficiency causes severe mental retardation, epileptic seizures and other cruel effects. Until a few years ago, scientists knew of only 13 cases in the entire world. Now, they know of 20 more victims, within a few blocks of each other on the Utah-Arizona border.
The twin towns of Hildale and Colorado City started out small. Most of the 8,000 residents are descended from a handful of early founders five generations ago, according to community historian and former member Ben Bistline.
Ben Bistline, Community Historian: "They claim to be the chosen people, the chosen few. And their claim is they marry closely to preserve the royal bloodline, so to speak."
That's a bitter irony, because there's a birth defect so profound, it's hard for Isaac Wyler to talk about. He grew up in the FLDS church. Prophet Warren Jeffs kicked him out two years ago. Wyler's ex-wife is an aunt of several victims of the birth defect.
Isaac Wyler, Relative of Victims: "I don't want to describe it in too much detail. It's not a real pretty sight."
The children are seen at clinics and hospitals in Utah and Arizona. Dr. Theodore Tarby saw the first case 15 years ago. He co-wrote a journal article on Fumarase Deficiency after eight cases were discovered in FLDS families. Now he knows of 20 victims, all retarded.
Dr. TheodoreTarby, Arizona Neurologist: "In the severe category of mental retardation, which means an IQ down there around 25 or so."
Isaac Wyler: "I've seen some children that can talk and communicate a little. And I've seen others that are totally laid out. They have no movement. They can't do anything by themselves. Literally if they're eight-years old, it's like taking care of a baby, you know."
Dr. Tarby says they have unusual facial features, frequent epileptic seizures and require constant care. By all accounts, parents do a good job.
Isaac Wyler: "Very good job."
Dr. Theodore Tarby: "In some ways, they are really kind of remarkable people."
This simplified chart shows how one recessive gene from an early founder can become many. Two recessive genes can cause the disease in the fourth generation, if cousins marry and the bloodlines braid together.
In this community, marriage to cousins is routine.
Isaac Wyler: "Well around here, of course when you get married, you're told who to marry and when to get married and things like that, so that's really not going to change, I don't believe."
But even with the causes so clear and the consequences so tragically obvious, will the followers of Warren Jeffs ever change their practices?
Ben Bistline: "As long as they've got the leadership they've got, they'll never change." It's believed more than half the residents carry the recessive gene. The number of cases will likely grow.
Reporter: "Would you be surprised if it went into the hundreds in a couple of generations?"
Dr. Theodore Tarby: "No, it wouldn't surprise me. Wouldn't surprise me."
Isaac Wyler: "Now that they know there's a problem, they need to quit sweeping it under the rug and pretend there's not a problem and say, 'Okay, now you know when you cross these certain lines together, then this happens.' And they need fresh blood."
The taxpayer burden for medical care seems high, but for privacy reasons officials in both states will not reveal details.
We learned the names of some victims and parents but chose not to reveal them. Through intermediaries we offered the parents a chance to speak but got no response.