ON THE SATURDAY BEFORE HALLOWEEN, Edward Wernecke stood in his kitchen, thumbing through a stack of file folders filled with photocopies and Internet printouts of medical articles. The solemn 53-year-old rancher was indifferent to the flies that buzzed around the room and landed once in a while on his face and white Resistol. Edward’s wife, 37-year-old Michele, stood nearby. Despite the cheering crescendos of the couple’s 3-, 5-, and 14-year-old sons, who chased a toy monster truck through the hallways, Michele and Edward seemed unruffled. It was hard to know whether they were intensely focused or simply dazed.
Speaking in a methodical, relaxed monotone, Edward laid out his family’s ten-month-long ordeal, a story made famous by TV reports and newspaper headlines. It had all started the previous December, when Edward and Michele’s twelve-year-old daughter, Katie, had developed a severe cough. It had seemed like bronchitis, but on January 7, when her breathing grew labored, Edward took Katie to the emergency room. The news he received was devastating: A fifteen-by-eighteen-centimeter mass in Katie’s chest was choking her. By eight o’clock that night, she had been diagnosed with Hodgkin’s disease, a cancer of the lymph nodes. “Talk about your world stopping,” Michele said. “All I could think is that my baby has cancer and she’s dying.”
The Werneckes would barely have time for heartache. Instead, they soon found themselves entrenched in a prolonged legal battle. When they refused doctor-recommended radiation treatment for Katie, fearing its toxic side effects, she was removed from their custody by Child Protective Services. Taken from their ranch in Banquete, thirty miles west of Corpus Christi, their daughter spent the summer being shuttled between M.D. Anderson Cancer Center, in Houston, and a nearby foster home. In early fall, when doctors worried that Edward was still impeding Katie’s treatment, a judge in Corpus Christi severed Edward’s communication with her altogether.
The case garnered national attention. Parents around the country were surprised to learn that if they dismissed a doctor’s recommendation, their child could be taken from them. But that is indeed the case. In Texas, losing custody of a child in such situations is unusual but not unheard of. While the most-common instances involve religious objections, such as the refusal of blood transfusions by Christian Scientists or Jehovah’s Witnesses—which legally constitutes medical neglect—the state has also intervened when religion has played no part in the failure to comply with the prescribed care for a minor. In a well-publicized case in 1996, for example, Fort Worth ten-year-old Rachel Stout found herself at the center of a custody battle with CPS when her family whisked her off to Canada for alternative treatment to a life-saving colectomy. Ultimately, Rachel was given court-ordered surgery and returned to her parents. University of Texas at Austin law professor Jack Sampson says that this is typical of cases he has seen, though he doesn’t see as many as he used to. Often, he says, “if the parents have talked to a lawyer, they know they’ll lose.”
In the case of the Werneckes, the question of medical neglect was perhaps the murkiest the state had seen. F. Scott McCown, the executive director for Austin’s Center for Public Policy Priorities and a retired state district court judge who has handled more than two thousand child abuse cases, says, “You either say children are the property of the parents, or you say there is a point at which parents don’t get to make decisions. If you go the second route, you have to leave it up to judges to decide the child’s fate. It’s almost impossible from a distance to find out whether the decision is right or not. Even when you have the facts, sometimes it’s difficult to say what’s the right thing to do.”
In October the Texas Supreme Court had finally restored supervised meetings, and Edward was excited now to have scheduled a reunion for October 30, his first chance to see his daughter in six weeks. When Michele received a call on her cell phone to confirm the appointment, Edward watched as she paced the kitchen. Their five-year-old had come down with strep throat, which they knew might complicate their meeting with Katie. Michele put the phone to her shoulder to consult with Edward.
“This is the social worker,” she said matter-of-factly. “She wants to know if we’re coming. I told them we might not be able to, and now Katie is crying. What do I tell her?”
“Any trace of strep could kill her after her chemo treatment,” Edward replied.
“Should I say that?” she asked.
Edward stared silently at the kitchen counter for a minute, then said, “My parents could take the boys, but they’re so old the strep could kill them too.”
“Well, the social worker needs to know if we’re coming. Should I call them back?”
He nodded yes.
THE WERNECKES HAD ALWAYS been a busy family, and the kids had had the run of the ranch while Michele managed a feed store in nearby Kingsville and Edward worked cattle. Once in a while, Edward and Michele’s lax supervision caused concern, like the time a CPS worker found Katie and her older brother wandering near a road. But Edward and Michele considered their children independent, not like smothered city kids. Katie was a precocious, freckle-faced Bible-drill champ, the valedictorian of her seventh-grade class, and when her hacking cough had worsened around New Year’s Day, she’d done her best to ignore it, reluctant to ruin her perfect school-attendance record with a trip to the clinic. When Edward finally took her to Driscoll Children’s Hospital, in Corpus Christi, he wasn’t surprised by her confident response to the diagnosis. “This is just a bump in the road,” she reassured her family. “It’s only cancer.”
Edward was less optimistic. He staggered through the halls of the hospital in tears after Dr. Nejemie Alter, Katie’s pediatric hematologist-oncologist, told him that she might have died of suffocation within 24 hours had she not come in. Given the