Whose Life Is It Anyway?
When Edward and Michele Wernecke rejected standard medical treatment for their cancer-stricken daughter, the state took twelve-year-old Katie out of their custody—and set off a nationwide debate over the meaning of parents’ rights.
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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 right treatment, however, she would have an 80 to 95 percent chance of recovery. Edward called Michele that night from the hospital to explain the treatment options for a child with Hodgkin’s disease: either four rounds of chemotherapy or two rounds of chemotherapy followed by radiation.
In late April, there was good news. After four rounds of chemo, Katie’s PET scan showed no active cancer. Edward felt victorious. So when Alter suggested following up with radiation from Katie’s neck to her diaphragm to ensure the cancer’s eradication, Edward hesitated. Since his daughter’s diagnosis, he’d been combing the Internet for articles on Hodgkin’s and its cures, and what he’d learned about radiation disturbed him. With a doctorate in agriculture from Texas A&M University, he prided himself on being an independent thinker. One article in the New England Journal of Medicine, written by Vincent DeVita, the former director of the National Cancer Institute, said that radiotherapy “by itself increases the risk of late second solid tumors in the irradiated field and the incidence rises steeply when radiotherapy and chemotherapy are combined.” Radiation, it turned out, could stunt Katie’s growth, make her sterile, and increase her chances of getting breast cancer.
Requests to avoid radiation, Edward learned, are not unusual when there are viable alternatives. When cyclist Lance Armstrong, for example, was diagnosed with testicular cancer, he decided against conventional radiation in favor of customized therapy. Emboldened by his research, Edward requested another oncologist’s opinion. Alter referred Katie to a pediatric oncologist in Corpus Christi, then suggested oncologists in McAllen, San Antonio, and Houston. But Edward was skeptical, worried that anyone whom Alter referred would of course parrot the standard treatment.
The Werneckes dragged their feet. It was hard to justify subjecting their daughter to radiation if the cancer was inactive. Alter’s worries, meanwhile, escalated with each idle day. In his mind, the Werneckes’ hesitancy was not only disastrous; according to state law, it constituted medical neglect, as defined by the Texas Family Code: “the failure to seek, obtain, or follow through with medical care for the child, with the failure resulting in or presenting a substantial risk of death, disfigurement, or bodily injury or with the failure resulting in an observable and material impairment to the growth, development, or functioning of the child.” In early May Alter called CPS. “[Edward] was reluctant to take his daughter for radiation treatment,” he would later testify in court. “That’s when I had to call [the state].”
CPS investigator Kim Garcia, hearing that the Werneckes showed no intention of making a radiation appointment, issued an ultimatum: Make the appointment by May 31 or the state will remove Katie from your custody. On June 1, when the Werneckes had still not scheduled an appointment, Garcia drove out to Banquete for Katie. But she was too late. Michele and Katie were already roaming the coast in search of a hiding place.
When Garcia pulled up to the house with two police officers, Edward tried to bar the door, but they forced him aside. “She’s not here,” he insisted as they checked rooms and closets. Garcia took note of the house: Stacks of paper from that year’s tax returns were piled around the living room. Unwashed dishes and Katie’s medicine sat on the kitchen counter alongside livestock syringes (Edward claims they were sealed with plastic caps). Before leaving, she filled out a report stating that the house was a safety hazard. As Edward read the paperwork, officers loaded his stunned boys into a car and issued an Amber Alert for Katie. He paced his empty house for days. “It was a completely devastating feeling,” he said.
Within two weeks, CPS had found Katie hiding at a relative’s ranch and taken her into state custody; the boys were returned home. As Katie spent the summer at M.D. Anderson, Edward and Michele went to court repeatedly to fight the state and get her back. They also worked to publicize their cause, igniting debates nationwide over parents’ rights and medical decisions. Talking to Katie Couric on the Today show, Michele said, “Treat her for what her body calls for and not standard protocol.” Edward’s blog, prayforkatie.blogspot.com, received thousands of hits. Letters poured in to the Corpus Christi Caller-Times, some giving voice to the question that was on every parent’s mind. As one Washington woman put it, “Does this mean that all of us must now abdicate our rights to decide our own methods of medical treatment and let the state decide?” Soon the Werneckes would be petitioning Governor Rick Perry for a meeting, broadcasting their plea on area billboards: “Katie Wernecke wants to go home to her parents.”
ON JUNE 10 THE WERNECKES listened in shock as a radiologist reported in court that Katie’s cancer had returned, her chances of recovery now down to 50 percent. Though Katie needed her parents’ support more than ever, their access continued to be monitored; when they visited at M.D. Anderson, guards followed them everywhere. The presiding judge in Corpus Christi, Carl Lewis, was torn. Medical neglect cases rely heavily on a judge’s discretion, and his information on Katie was constantly changing. At the court hearings throughout the following weeks, CPS argued for radiation based on the opinions of Katie’s M.D. Anderson doctors, including pediatric oncologist Robert Wells. Sometimes radiation can be avoided, he explained in court testimony, but “with patients like Katie, with [a] large mass, the relapse rate is fifty percent. That’s why chemo-only wasn’t considered.” While it was a sound argument, Lewis was eager to hear the Werneckes’ proposal. But even though they had been campaigning against radiation—going so far as to threaten Katie’s radiologist with a lawsuit—they offered few alternatives in the courtroom. Still, Lewis remained open-minded: He would let two independent Hodgkin’s disease specialists review Katie’s medical records for a hearing in early September before making a decision.
By the time of the hearing, however, the family’s lawyers didn’t have the necessary opinions. “We couldn’t find a doctor to testify on our behalf,” Luis Corona, the Werneckes’ local counsel, would explain later. “The problem was, we couldn’t have her examined because she was in state custody. A lot of doctors don’t want to go against conventional treatments. They didn’t want to get involved in the controversy.” It was a costly holdup; the judge could not evaluate a nonexistent alternative. After almost half a dozen hearings, and with no viable options to consider, Lewis had had enough. “This isn’t poker,” he said. “I’m not waiting anymore. Every hour we wait is an hour that’s critical to this child’s life.”
Katie had had enough too. After months of hearing the side effects of high-dose chemo, she’d made a choice herself: She was not going to take the next scheduled round. Refusing to cooperate with nurses or doctors, she pulled the catheters out of her shoulder and drank a soda when she was told it would interfere with the procedure. Alarmed, Lewis met with Katie in person, alone. Three days later, on September 19, he told the Werneckes that their disapproval of standard protocol was affecting Katie’s cooperation. “How long are we going to do this…dance?” he pleaded. Lewis cut off all communication between Edward and Katie; Michele would be allowed visits provided she sign a contract in which she’d agree to encourage doctors’ recommendations. Immediately after the hearing, Lewis underwent open-heart surgery for a torn aorta. He signed the orders the next morning in his recovery bed.
ON OCTOBER 31 EDWARD CARRIED a box full of files into the courtroom. As he silently approached his place across the aisle from CPS workers and lawyers, he wore the same grave expression he had shown in newspaper photos. Michele smiled and bounced a little as she talked. She and Edward had found a way to visit Katie the previous day after all, and Katie had seemed to be in good spirits. With Lewis recovering from his surgery, a new judge, Jack Hunter, was presiding, and Michele was optimistic that she’d finally get Katie back for good.
Hunter had made it clear before the hearing that he wasn’t going to rehash who did what to whom, stating, “My job is to save this baby, and I’m going to do it.” He admonished the lawyers when they traded accusations about Katie’s condition. “Let’s say you’re right, and in nine months we find you’re right and the child has died,” he said. “Every hour [we argue] is one less she has to live.”
Katie’s chances of beating Hodgkin’s had now slipped to 20 percent. Although she had resumed chemotherapy, her doctors attributed the relapse to her unwillingness to stay on their treatment schedule. Edward and Michele, who blamed the doctors for her deteriorating condition, had an alternative to suggest. A doctor in Wichita, Kansas, at the Center for the Improvement of Human Functioning International, would give Katie vitamin C treatments as a next step. After lengthy arguments by the lawyers about guarantees and “true treatment plans,” Dr. Wells testified via speakerphone, urging Katie’s continued treatment at M.D. Anderson. “Two times when the therapy stopped, the disease has come back within a month,” he said. “If Katie leaves for a month…I’m afraid she’ll have a recurrence, and I don’t know if I’d have any therapies that can help her…At some point you run out of time…At some point this disease will be incurable.”
Finally, Hunter asked for Katie on speakerphone. Her voice was weak, and she sounded tired. “Do you feel like everyone is pulling on you?” he asked.
“Kinda,” she said.
“What do you want to do?”
“I want to go home.”
“Do you want to talk to a doctor in Wichita?”
“We’ve all gotten off whack,” Hunter said after the final arguments. “The court is of the opinion to dismiss the department.” Katie could return home.
EMERGING FROM THE HOSPITAL on November 3, Katie shrunk from the press as she stood between her parents, looking pale in the bright sun. She stared at the ground and answered only a few questions. “I’m feeling better,” she told the Caller-Times. “It was very boring and kind of lonely without my parents.” Edward, for the first time in a while, was smiling. “Today,” his lawyer’s press release read, “all Texas parents have achieved a substantial victory protecting their rights to decide how their children will be cared for when a medical crisis occurs.”
It will be a while before anyone knows the measure of victory. Lingering questions about the wisdom of the CPS intervention, the doctors’ persistence, and the Werneckes’ determination can only be answered by Katie’s outcome. Given the many variables, any family-law attorneys hoping to learn hard-and-fast rules from a case like this will be disappointed.
Although Judge Hunter had asked that Katie return to M.D. Anderson for follow-up treatment, Edward canceled all of Katie’s appointments at the facility. At home, Katie received vitamin C injections from a registered nurse, and that alone would be her treatment until further notice.
“Dr. Wells called me the other day,” Edward said in November, as Katie received her treatments in the next room. “He said that if Katie doesn’t get radiation, she’ll die. I told him we were in another doctor’s care. I said, ‘Why do you ask? Are you thinking of turning us in to CPS again?’”
The answer, Edward was surprised to hear, was yes.