At other times, the large domed building on the Baylor University campus would have served as a lecture hall for discourses on higher education.
But on this gray, biting-cold early April morning in Waco, crowds began gathering for far more than another day of academic enlightenment. About two dozen wheelchair-bound protesters arrived to position themselves on the outside steps. Soon their chant rippled across the brick walkway:
Infanticide is homicide.
Infanticide is homicide.
Briefcase-bearing lawyers in stylish dark suits escorted their clients, top corporate hospital officials and representatives of influential medical organizations, into the large room to join in the wait for the appearance of the featured guests: nine somber men and women in stark black robes.
The Texas Supreme Court had come to this new Baylor landmark to embark on what is likely to be a different landmark for the entire state -- in the fundamental clash between medical ethics and the law, a precedent-setting case that could determine how hospitals and doctors settle such conflicts in the future.
The path to the state's highest court began in Houston in 1990 with only the intensely personal tragedy of a mother giving birth to an extremely premature baby in Houston. The hospital refused requests from Karla Miller and husband Mark to avoid extraordinary measures to keep the underdeveloped newborn alive. The treatment, as the parents feared, caused their daughter to develop severe disabilities. The Millers later sued, asking for damages for the enormous costs of caring for their child.
Even four years ago, the issue seemed to have been settled. A Harris County jury ruled that HCA-Hospital Corporation should pay $42.9 million to cover the expenses. Two years later, a controversial decision by a Houston appeals court overturned that verdict.
None of the supreme court justices was even on the bench when the plaintiff was born, but they had half-expected to meet Sidney Ainsley Miller -- at least to consider the case. By the time the two sides appeared in Waco, the debate had evolved well beyond the question of who pays an 11-year-old girl's medical bills.
What began as a straightforward case of parental consent for a child's treatment has become a question of how far physicians should go to sustain life by artificial means. Justices began facing their highly complex options: They could affirm the verdict and award to the Miller family, or they could in effect require doctors to try to resuscitate all newborn babies, with or without parental consent. That means the court can recognize that a hospital practice caused her extensive injuries -- or it could establish that very practice as law to be followed for every future Sidney Miller.
On this morning in Waco, her parents stepped through the crowd, by now oblivious to the stings of protesters' chants as well as the cold prairie wind. Karla Miller sat with her head down, comforted by her husband. Soon the proceedings would return them to their initial tragedy.
Donald Kelley, a young neonatologist at The Woman's Hospital of Texas, was making his rounds on that day in August 1990, when he was asked to speak with a couple whose child was about to be born under the worst circumstances.
The 28-year-old mother had been admitted early that morning, little more than five months into her pregnancy. Her doctor had phoned in an order for terbutaline, an asthma treatment used to stop preterm labor. At the moment, the patient was resting and stable.
Kelley was less than a month into a three-year fellowship at Baylor College of Medicine. He had discovered during his residency at Southwestern Children's Hospital in Dallas that he enjoyed working with preterm infants, and he looked forward to a long career in a specialty that was saving more of them every year.
But could it save them at 23 weeks?
At that time, many neonatologists considered it experimental to provide anything more than warmth and fluids for an infant born that prematurely. Others, however, would have argued for aggressive medical intervention whenever there was the slightest chance of survival.
The slightest chance was, in fact, the only chance a child born at 23 weeks had 12 years ago. But it existed; and until the boundaries of viable life could be more firmly established, neonatologists had adopted an informal but widely followed standard: The decision to initiate or withhold intensive, life-sustaining treatment of the most premature newborns should be left to the parents.
Mark and Karla Miller were expecting the first child in their five-year marriage. Karla's pregnancy had been uneventful until she woke up in pain and noticed blood on her nightclothes. Karla called her obstetrician, who told her to go to the hospital.
Dr. Mark Jacobs arrived at The Woman's Hospital hoping to delay Karla's labor. While the terbutaline seemed to be working, she was sick and leaking amniotic fluid. Jacobs, deciding the child might be born that day, tracked down Kelley to confer with the Millers.
Kelley told the Millers that the fetus appeared strong and healthy, although only about 8 percent of the babies delivered at 23 weeks survive on their own. Eight of ten are disabled, according to the latest research, with one in four having cerebral palsy.
The infant would require immediate intensive care at birth, Kelley said. A neonatologist in the delivery room would perform an endotrachial intubation -- the insertion of a tube into the infant's throat -- to begin mechanical resuscitation with 100 percent oxygen. A clinical study under way at Baylor provided Kelley with access to surfactant, a soaplike substance that keeps the lungs' air sacs open.
But that resuscitation would pose certain risks, Kelley warned, especially for a very premature newborn whose lungs haven't even begun to form. Pure, pressurized oxygen is extremely toxic. Even with full-term infants, mechanical respirators had been linked to intraventricular hemorrhage, or "brain bleed," which is invariably followed by cerebral palsy.
The Millers listened and reached their decision within ten minutes. The proposed medical procedures seemed more frightening than hopeful. Karla, who had never spent a night in a hospital, was sure the baby would suffer horribly and that the odds were very small of the child ever having a normal life. Her husband agreed. They decided to have the newborn placed in Karla's arms and to pray for the best.
Almost 11 hours later, Karla gave birth to a baby girl. Doctors immediately inserted the tube into her throat and connected it to a ventilator -- against her parents' wishes. In her first 24 hours, she endured a spinal tap, repeated blood transfusions and "TPN protocol," the injection of nutrients, including liquefied saturated fats.
Two days later, the infant's brain began to bleed. She developed hydrocephalus, an incurable leak of cerebrospinal fluid that causes seizures. Doctors relieved the pressure on her brain daily by drawing the fluid out with a syringe; she was too young and tiny for anesthesia. On the third day, Karla finally left her bed and, for the first time, laid eyes on her daughter. Four months later, the baby was taken off the respirator and finally placed in her mother's arms.
Today, Sidney Ainsley Miller is 11 and a half years old, a pale, slender girl with brown eyes, a cute, crooked smile and auburn hair. Her favorite toy is a small battery-powered keyboard. She can't do more than place it on her lap and, with the twisted hand on her one good arm, push a button to play a song. On a recent afternoon, while her parents were in the next room and her brothers, Bradley, age ten, and five-year-old Jake, were on the porch of the family's grand old house in Sealy, she found something she liked. For the next half-hour, "The 12 Days of Christmas" played over and over again, filling whatever silence there was.
Mark and Karla would probably go mad wondering if, more than anyone else knows, Sidney is tormented by her inability to walk, talk, feed herself or use the bathroom. But they accept the hardships and the pleasures in their daughter's life like any other parent.
And like any parent of a disabled child, their greatest anxiety is the future, when they will no longer be here to care for Sidney. In an era of continuing state funding cutbacks for the severely disabled, they realize it is all on them, that even basic services available today will look generous in a few years.
If there's anything that sends the Millers down a sad path, it's the question, What if? As they'll tell you, it can never be answered. They thought the solution had come through the justice system, but even that is now in doubt.
In January 1998, a Harris County jury found that HCA -- the nation's largest for-profit provider of health care and the owner of The Woman's Hospital of Texas -- committed battery by causing injuries in reviving a newborn without consent from the parents.
Calling the hospital corporation "grossly negligent," the jury awarded the Millers $42.9 million in damages that would ensure payment of the staggering costs of Sidney's future medical care.
HCA pronounced itself "astounded" by the verdict. The corporation had argued that The Woman's Hospital had a "moral and legal obligation" to resuscitate Sidney, or risk violating state and federal laws against child abuse and medical bias toward the disabled. Jurors, however, recognized that HCA's first duty was to Mark and Karla Miller -- for generations, Texas has recognized the common-law right of parents to make medical decisions on behalf of their children.
In the 1920 landmark case of Moss v. Rishworth, the state's highest court upheld a Texas law that "wisely reposes in the parent the care and custody of the minor child, and neither a physician nor those in temporary custody of the child [may] determine those matters touching its welfare." In less satisfying language, certain statutes in the Texas Family Code reflect the intent of Moss, although like their source, they don't force the principle to an illogical conclusion.
Informed consent from parents is not required in life-threatening emergencies, when it might come too late. Moreover, if health care providers believe withholding treatment is not in the child's best interest, the Texas Family Code allows them to seek out a judge to appoint a guardian to give consent.
The size of the jury award may reflect a certain moral clarity in the case of a disabled girl's struggle against a corporate health care giant. That 12 people reached a verdict in less than six hours, after nine days of detailed and conflicting testimony, suggests the law was pretty clear, too. Four years later, that's no longer the case.
In December 2000, a three-judge panel from the 14th Court of Appeals in Houston reversed the jury's verdict. The majority concluded in a 13-page opinion -- authored by Justice Richard Edelman with then-chief justice Paul Murphy in agreement -- that the trial court had erred in finding HCA liable for Sidney's injuries "under the facts of this case."
Now it was the Millers' attorneys who were astounded. The appellate panel had taken obvious liberties with those facts, which, as a matter of law, had been established by the trial jury.
The most significant discrepancy was the appeals court's determination that Sidney's birth was an emergency situation not requiring parental consent. The major flaw in this conclusion is that even the U.S. Supreme Court agrees that an emergency is an "intensely factual question" that can be answered only by a jury. HCA never claimed the "emergency treatment doctrine" as a defense at trial.
To get around that, the 14th Court majority categorized the resuscitation of a newborn as "urgently needed, life-sustaining medical treatment." And so far as the appellate judges could determine, there was no state or federal precedent that grants Texas parents the right to withhold such care.
If there is such a right, the justices wrote, it can be exercised only on behalf of the terminally ill. Otherwise, wouldn't it "apply to otherwise healthy, normal children or only to those with some degree of abnormality?"
Finally, the majority concluded that the Millers had no right to withhold treatment until their child was born because a fetus is not a "person" under Roe v. Wade and the U.S. Constitution. Once Sidney was born, she required "life-sustaining medical treatment," which parents have no right to withhold, the justices said in a ruling without precedent.
They went one step further, however, by ruling that HCA wasn't required to get a court order to resuscitate Sidney because no court can make the decision between life and impairment.
Former 14th Court justice Maurice Amidei, the dissenter in the opinion, said that, in his view, HCA's argument fell apart as soon as it mentioned the word "emergency."
"If it really was an emergency," he said, "it should have been tried as an emergency."
The rest of the majority's ruling doesn't hold up well, either, Amidei says. "We've never had a case like this before in Texas. But what it came down to was a 'live person,' and the question was, Do you or do you not have to have consent to treat a 'live person'? We don't need to be getting into an argument about whether it has any rights as a fetus."
The court of appeals claimed the "implications go well beyond the facts" and effectively punted the case to the Texas Supreme Court.
Michael Sydow, the Millers' trial lawyer, says the only implications in the case derive from the appellate court's "contortion" of the evidence used by jurors to reach their verdict.
"In our system, in Texas, once the jury makes a finding, that's the truth," Sydow says. "That's it. You can't keep coming back and arguing the facts."
Decades of scientific and ethical debate have yet to resolve the medical implications of the Miller case. In 1979, ethicists at the Hastings Center, a quality-of-life think tank, compared the neonatal intensive care unit to an "oppressive medical Vietnam, the costly, sometimes abusive, use of technology with little regard for the consequences."
Twenty years later, in a report called "Neonatal Viability: Pushing the Envelope," pediatric researchers at Loyola University concluded that the legitimacy of aggressive NICU practices rested on the distinction between the standard of care and experimentation.
That's a distinction the Texas Supreme Court will now have to make in Miller v. HCA. Whatever logic justices apply to the legal arguments, the ultimate wisdom of their decision will nonetheless have to be weighed against the medical evidence. What hope could medicine offer a child like Sidney Miller today? And is it a risk Texas parents should be forced to take?
Peer-reviewed research published throughout the last decade suggests that neonatologists reached as deep into the womb as they ever would around the time Sidney was born.
A study recently analyzed infants born between 20 and 25 weeks' gestation in 276 maternity wards in Great Britain. Overall, 61 percent died before discharge. Of the survivors, 64 percent showed signs of chronic lung disease, cerebral palsy and other disabilities. In the United States, much of the research in the last decade has focused on infants born between 23 and 25 weeks. In 1995, only four out of ten lived to be discharged from the NICU. Four out of ten survivors had moderate or serious disabilities, including brain damage.
Citing those figures, the American Academy of Pediatrics conducted a survey and found that neonatologists had a "high degree of burden and internal conflict" about the level of treatment to provide in such cases. Dr. Jean Steichen, a pediatric researcher at Cincinnati Children's Hospital, says practitioners still believe the best way to deal with the uncertainty of extreme prematurity is to leave it to the parents.
"Most neonatologists would agree it's the parents' prerogative" to resuscitate at 23 weeks, Steichen says. "And I think most ethicists agree it is the parents' prerogative. Because I don't have to take this baby home that I have now decided to save against the parents' will, as the baby needs care for many, many years."
Apparently, however, the Texas medical establishment is the exception to this approach.In February, ten state and local medical societies, including the largest, the Texas Medical Association, asked the state supreme court to uphold the appellate ruling in favor of HCA.
The amicus, or "friend of the court," brief filed with the supreme court was prepared by Claude McQuarrie III, a Fulbright & Jaworski attorney and TMA lobbyist. Joining in were, among others, the Texas Pediatric Society, Texas Children's Hospital and Baylor College of Medicine. The brief argues that letting the Texas Family Code into the NICU "could force civil and criminal liability on healthcare providers."
The Miller case touches on issues that are "certainly important to physicians," says Rocky Wilcox, a staff attorney for the TMA. However, he acknowledges that the statewide group had taken no position until lawyers for HCA "asked us to get involved."
That request was made in a January 11 letter to the TMA from HCA's lead attorney, John Serpe. Wilcox declined to release the letter -- "I don't feel it's proper," he said -- and Serpe did not respond to a request for an interview.
Wilcox admitted that the TMA did not solicit the views of the Millers' attorneys before siding with HCA. Nor did the association consider the medical and ethical views of Texas doctors. "We don't poll our members," he said. "We never have."
To be sure, "tort reform" is of considerable interest to physicians, especially neonatologists. A survey by the MacLean Center for Clinical Medical Ethics in Chicago found that most NICU physicians expected to be sued if they practiced long enough. It's not surprising that those who had already been sued considered the claims against them to be baseless.
"In this context," the researchers concluded, "efforts to use malpractice claims to seek out evil-doers appear ill-conceived Our data suggest that malpractice in the NICU appears to function more like a lottery than like a mechanism for either quality assurance or just retribution."
For years, neonatal and pediatric research-ers have tried to develop clinical guidelines for the NICU, including when and how to resuscitate extremely premature newborns. But the effort has invariably run aground on the possible legal and ethical consequences. For example, a doctor might feel compelled to depart from the guidelines if they don't meet established medical procedures for a patient. But if they should end up in court, the patient's lawyer would undoubtedly argue that such guidelines are the standard of care and the doctor should have followed them.
In a March 2000 health care symposium in Arizona, HCA vice president Jim Hinton warned that information databases on malpractice claims could threaten the "immunity" of established clinical practices. Barry Furrow, director of Widener University's Health Law Institute, says that argument ignores the established practice of giving patients -- especially the parents of minor patients -- enough information to make an informed decision.
"For the last couple decades, we've been moving into an era of health care defined as 'consumer empowerment,' " Furrow says. "Patients are no longer passive. They are actively encouraged to collaborate with their doctors, and the obligation of the doctor is much greater to give patients a say in their own treatment."
The megagiant HCA was formed by the merger of Columbia Healthcare -- a corporation co-founded by Texas billionaire Richard Rainwater -- and the Tennessee-based Healthcare Corporation of America. The company owns more than 200 hospitals and surgical centers across the country -- more than 50 of them in Texas and about a dozen in the Houston area.
While it has been lauded for its economy-of-scale "cost strategies," the company also has been criticized for business practices that, in the view of many, compromise patient care. Among its most controversial innovations was to entice doctors to invest in the company. While this encourages practitioners to keep referrals within HCA's network, it also may encourage physicians to be overly concerned with the value of their investment.
In December 2000, the corporation agreed to pay $900 million to settle various claims, including that it had billed governments for care and padded the bills of adolescent psychiatric patients. Two executives were eventually sentenced to prison terms, although an appeals court recently overturned those convictions.
Those actions were unrelated to the Miller case, although the company's push for profits is worth considering before the aggressive resuscitation of all newborns might become the law in Texas.
Neonatology is among the most expensive field for medical treatments. Research suggests that the cost averages about $250,000 per infant for babies born before 26 weeks who survive in neonatal intensive care units for more than four months.
According to a study by the Medical College of Wisconsin, the since-repealed mandate requiring earlier discharges after delivery led many hospitals and physicians to transfer more newborns to the NICU, "thereby allowing for longer hospital stays to be reimbursed by insurance carriers." The study noted that while premature infants make up less than 7 percent of all births, they accounted for half of all hospital delivery charges.
The high cost of neonatal care has also cut the other way. In 1997, an analysis of 57,000 premature births in Philadelphia found that uninsured infants and those with Medicaid coverage were nearly twice as likely as insured infants to be transferred to other hospitals, in a practice known as patient dumping.
Jurors in the Miller trial did not consider whether the unauthorized treatment was financially motivated. But Mark Miller believes his daughter wouldn't have been resuscitated if he and his wife had been indigent.
"Karla was preregistered at the hospital," he recalls. "We had already filled out all the insurance forms on her policy. All she had to do was show up. Sometime between seven and eight that morning, when they found out everything had turned to shit, they told me they needed my insurance."
The Millers estimate that the cost of Sidney's care at The Woman's Hospital was $200,000. When she needed brain surgery that Woman's was unable to perform, Sidney was moved to Texas Children's Hospital. By the time she went home in December 1990, Mark Miller's $1 million policy had been exhausted.
Though Miller says the family has "spent a bunch" out of pocket since, he and Karla consider themselves relatively lucky. Sidney has undergone one major brain operation, but she hasn't been back to the hospital in four years. Still, doctors expect Sidney to live as long as anyone else, and a medical emergency is always a possibility for a child with her disabilities.
That's one reason why the appellate decision angers Sydow, the Millers' lawyer. If it's upheld by the Texas Supreme Court, Sydow predicts a "totalitarian system" of health care in Texas, whereby treatment decisions are made by for-profit providers like HCA.
"What HCA is asking the supreme court is to allow them to do the same thing they did to the Millers without the bother of being sued," Sydow says. "But who decides what treatment is 'life-sustaining'? If it's doctors and hospitals, what stops them from withholding any treatment until they see clear to call it 'life-sustaining'?"
To illustrate his point, Sydow posed the hypothetical case of a child exposed to a deadly virus. The child has only a 20 percent chance of contracting the virus, which is fatal 80 percent of the time. The available 'life-sustaining treatment,' a vaccine still in clinical trials, has been linked to brain damage. "Whose duty is it to decide which risk is worth taking?"
When the Millers arrived at The Woman's Hospital, one alternative available to them was an abortion. At the first sign of chorioamnionitis, an infection of the amniotic membrane, the potential danger to Karla would have justified aborting the fetus. If she had awoken in pain and bleeding in her third trimester and her fetus had subsequently been diagnosed with severe and irreversible abnormalities, Karla could have had an abortion.
That became less of an option, however, the longer Karla remained on the labor-inhibiting experimental drug terbutaline, which can trigger strokes. Jacobs, her obstetrician, wanted to keep Karla on the terbutaline as long as he could, but if she had the baby soon, the hospital would need to know what to do.
Donald Kelley met with the couple and recorded their decision on Karla's chart: "Parents request no heroic measures at this time." Jacobs informed the NICU staff at The Woman's Hospital that there would be no need for a neonatologist if Karla gave birth. He also suggested that, while his wife rested, Mark make arrangements for a potential funeral.
The father returned from that dark task, only to be pulled aside by Jacobs. "He didn't say anything to Karla," Miller recalls in a voice cracked by emotion. "He asked me to meet with some hospital people, said it would be a favor to him."
Miller was introduced to Anna Summerfield, then-chief administrator for The Woman's Hospital, and Dr. Ferdinand Plavidal, chief of the NICU. Summerfield told Miller there was a problem with the parents' decision. "She said, 'Our hospital has a policy that requires we resuscitate any child that weighs more than 500 grams.' "
As the tense conversation continued, Miller says, he asked for a copy of the written policy and was refused, and questioned them about federal and state practices. Medical personnel talked about premature babies who went on to become normal children. Summerfield asked him to sign a document, he says, and he refused. Miller left not knowing what would happen in the delivery room.
A half-hour after the meeting, Karla's temperature soared to over 100 degrees, and Jacobs switched her to the labor-inducing drug Pitocin. Karla gave birth. Dr. Eduardo Otero, a neonatologist sent to the room by the hospital, took the newborn from a nurse.
"He didn't weigh her, clean her up or anything," Mark Miller says. "He just put her down on the table, tilted her head back and started pushing a tube down her throat."
When her parents filed their lawsuit in September 1992, Sidney had just turned two and was in the early stage of a series of surgeries to repair or replace the shunt beneath her scalp, which drained cerebrospinal fluid along a plastic tube into her abdomen. Seizures would rack her body when something went wrong with the device, and if the Millers didn't act quickly enough, it could be fatal.
HCA spent more than five years trying to get the suit tossed out by arguing the Millers had filed a frivolous "wrongful life" claim. The trial judge rejected HCA's move to dismiss the case and barred any discussion of "wrongful life" in court as irrelevant.
That judge, Carolyn Marks Johnson, who has since left the bench, also barred HCA from using federal "Baby Doe" laws that prohibit withholding medical treatment from disabled children. Johnson pointed out that was irrelevant: Sidney Miller was not born disabled.
HCA hinged its defense during the trial on the meeting shortly before the birth. Summerfield and Jacobs testified that everyone, including Mark Miller, had come to a "consensus" that a neonatologist would be present at birth to evaluate the newborn and provide treatment as needed. But Summerfield admitted in testimony that Miller never changed his mind and approved resuscitation.
The Millers never brought Sidney to the courtroom; they wanted the case tried on the facts and not on emotion. Their sole legal burden was to demonstrate that they were caring, responsible people who were capable of objectively deciding what was best for their child. When Karla was asked at trial what she was thinking when she and Mark made their decision to withhold resuscitation, she replied:
"I wanted them to hand me my daughter and let someone that cared and loved her hold her. And I didn't want them to hurt or mistreat her, but I wanted her to feel loving hands. I just couldn't stand the thought of her suffering and being a part of whatever experiment they wanted to do on her."
About four months after the trial, Karla Miller received a call from a friend who had caught wind of a seminar being held that afternoon at One Fannin, a medical building owned by HCA. The topic, she was told, was "the Miller case," and one of the featured guests was John Serpe, HCA's trial lawyer.
Karla hoped to arrive unnoticed, but she was hailed from across the room by Mark Jacobs. The Millers had briefly considered suing the doctors involved, but in their view, the physicians were simply following the hospital's policy of resuscitating all newborns that weighed more than 500 grams, whether the parents consented or not. That was the real issue -- not medical malpractice.
However, HCA saw the case differently, despite the verdict. As Karla sat in horrified silence, Serpe explained in the seminar that the Millers had "opted for death" for Sidney because they did not want to care for a child with disabilities.
In the weeks leading up to the Texas Supreme Court session, HCA sought to perpetuate that image. The corporation's lawyers and spokesperson maintained that the Millers had filed a "wrongful life" claim. In March, Woman's Hospital spokesperson Linda Russell told the University of Texas Daily Texan newspaper that the Millers had consented to the treatment.
After the hearing, in a brief segment on the case on a legal-affairs program on MSNBC, Serpe repeated that claim. The show's host, Dan Abrams, didn't buy it.
"I don't think you're being totally honest here," he said.
The Millers have grown used to such tactics, to the extent that they can ignore the accusations that they would have preferred a dead child to the daughter they have today. They have reluctantly appeared on several national broadcasts about the case, and continue to be amazed by the misinformation.
"The only time it really gets to me is when I'm watching a tape of 60 Minutes," Mark Miller says, referring to a 1998 report. "That's when I can really see the pain on Karla's face. It just tears me up, and in many ways I think it has about ruined her life."
As it is, the Millers' home is typical of the loving and stable sort, which is to say the demands of Sidney's mental retardation, seizures, chronic respiratory ailments and occasional brain operations aren't any more disruptive to raising three kids than they need to be.
Bradley and Jake help out by meeting the bus that brings Sidney home from school every day. Bradley says his mother has begun to allow him to lift Sidney from her wheelchair and carry her upstairs. Both boys occasionally feed their sister, too.
Bradley is a tall, dark-haired boy who enjoys skateboarding and baseball. He says one of his favorite games is when everyone gathers around on the floor and lays their heads on Sidney's body.
"Mom will ask, 'Where's Bradley?' and Sidney will tap me on the head," he says. "Then, 'Where's Jake?' and Sidney will put her hand on Jake."
Sidney and Bradley attend the same school, and he visits with her at lunch every day. Bradley says friends occasionally ask questions about his sister, but for the most part, they consider her like any other kid. He and Jake have known that for a long time.
"She looks at things the same way we do," he says one afternoon while he and Jake play with balloons. "It's just like, we like these balloons, and when we show them to her, she likes them, too."
Two weeks before the supreme court hearing, a consortium of groups that advocate for the disabled filed an amicus brief asking the justices to uphold the 14th Court of Appeals' opinion in HCA's favor. While waiting to be admitted to the oral arguments in Waco, Colleen Horton, a children's policy specialist at UT-Austin, said the jury's verdict back in 1998 was a "slippery slope."
"We cannot allow parents to make decisions before the child is born," Horton said. "To let a child die because of the potential for disability, that's defining the value of a child's life based on things we'll never know."
But it was quickly obvious that Horton had not followed the Miller case too closely. She was apparently under the impression that Sidney's brain hemorrhage had occurred two weeks after she was born -- not while she was being resuscitated just after birth.
"Are we going to punish a hospital for saving the life of a child?" Horton asked. "As far as I know, the hospital did not commit a malicious act."
Of course, the jury that heard the evidence reached a different conclusion. "Again, I'm not familiar with all the codes and the legal nuance," she said. "I haven't read all the briefs, but I got a little bit different information."
Horton also appeared to begrudge the Millers their $42.9 million judgment. Financial worries are a fact of life for the families of disabled kids, and huge liability judgments "for one child" do nothing to address those needs. If the family was truly concerned about providing for Sidney's care, they would attend state hearings on those issues, Horton argued.
When asked what brought her to Waco, Horton said she had participated in "several conferences with some of the attorneys working on the case." Had she ever met the Millers or talked to their attorneys about the issues? No, she replied.
Horton and about 130 other people learned of the Millers' issues in the arguments before the Texas Supreme Court. The family's appellate attorney, David Keltner, began with a reference to the protest outside.
"This case is not about 'opting for death,' " he said. "The Millers on seven occasions had intervened to save Sidney's life, at an expense in excess of a half-million dollars at Texas Children's Hospital."
Justice Nathan Hecht asked Keltner what prevented other less motivated parents from choosing to let their children die. Keltner pointed out that the U.S. Supreme Court addressed that concern in 1986 by blessing the "scheme" of letting a judge appoint a guardian if it was determined that parents weren't looking out for the child's best interests. Besides, Keltner reasoned, "Is the for-profit health care provider better motivated in terms of these decisions?"
"No, you let the parents decide," Keltner argued. "And if the physicians don't agree, you go an ethics committee -- HCA did not have one. Then you discuss the written policy -- they did not have one of those, either. And if there's still no agreement, the health care provider can go to the state."
Keltner had a relatively easy time with the nine justices and seemed to complete his prepared argument. HCA's appellate lawyer, Michael Hatchell, was halted by questions soon after he began. "The issue is, does anyone have the right, before a child is born, to dictate a course of treatment that will result in that child's death. In order to sustain their proposition --"
"Let me ask you something," Justice Craig Enoch interrupted. "Somebody made the decision to do something to the child. The issue here is, absent consent, what authority does the hospital have to take this step ?"
"Sidney Miller was entitled to receive precisely the same care that any full-term infant would --"
Before Hatchell could complete the thought, Justice Deborah Hankinson jumped in. "What in the family code gave the hospital the authority to make that decision?"
Hatchell paused momentarily, then launched into an argument that dominated the remainder of the session, to the detriment of the rest of his presentation. The attorney maintained that there had been consent in that the Millers' doctor invited the neonatologist in to evaluate the patient.
Again, before he could finish, Hankinson interrupted. "I go back to the question, what in the family code gave the hospital the authority?"
It was clear that at least a few of the justices had reviewed enough of the trial record to know HCA's appeal swung on certain interpretations of the evidence. Hatchell was cautioned several times not to retry the case based on that evidence, because the jury had already determined it wasn't factual.
At one point Hatchell referred to the meeting where hospital administrators had laid down the resuscitation policy. He tried to argue that Otero had resuscitated Sidney "under the form of a voluntary agreement to have the child evaluated and as a result of that decision --"
"Wasn't that issue decided?" Hankinson asked, cutting him off. "The jury decided that battery had been committed. That was decided against the hospital, and we must accept that basis."
Hatchell may have crossed a line with the justices -- all of them Republican and considered conservative -- when he unveiled a more recent defense by HCA: Sidney wasn't legally a "patient" until she was born; and at that point, it was an emergency situation that did not require parental consent.
"What authority do you have for that?" Hankinson asked.
"The Constitution does not apply to the unborn," Hatchell said. "That's Roe v. Wade."
It was downhill for Hatchell after that. Keltner loathed to get into any discussion with the court on abortion rights, simply because they had no relevance to the case. He nonetheless torpedoed it the first chance he got on rebuttal.
"What they are advocating to you is that Roe v. Wade should be extended," Keltner said. "But no matter what you think of it," the U.S. Supreme Court "recognized that babies have rights, and in fact it just says that the mothers' rights overcame the fetus, and that you had to bow to that right, in the third trimester."
Finally, Keltner pointed out, Nathan Hecht had authored an opinion not long ago that ruled an unborn child is a "person" for purposes of malpractice cases. It stands to reason, he concluded, that an unborn child has all the rights of any resident. And when it comes to medical treatment, Texas law gives parents the express right to make those decisions.
After the hearing, Colleen Horton was disappointed. The arguments hadn't included the issue of discrimination of the disabled. And she had a point: HCA had brought the issue -- and the protesters -- to Waco, but left them at the courthouse door. But, like so much of what the 14th Court of Appeals called "implications" of the Miller case, it had nothing to do with the facts.
One point in particular has not emerged in the almost 12 years since Sidney Miller was born: On any given day during the four agonizing months their daughter spent on life support, Mark and Karla could have found a pediatrician to help them pull the plug. Her father says that was a decision they never discussed.
"She's sitting there looking at you. She's alive. She's going to live," he says. "She's still living."
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