By Chris Lane
By Jeff Balke
By Aaron Reiss
By Angelica Leicht
By Dianna Wray
By Aaron Reiss
By Camilo Smith
By Craig Malisow
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.