It was the hardest decision they have ever had to make. When Karla Miller raced to a Houston hospital with labor pains, little more than five months pregnant, she and her husband, Mark, were told that despite efforts to delay delivery, their first child was on its way.
Calling the premature birth a "tragic miscarriage," doctors laid out the options. The first was to provide the newborn with food, water, and warmth and allow it to live or die on its own. The second was to do an experimental procedure that, they said, would almost surely leave the baby brain-damaged or severely disabled for life.
Painstakingly and with a lot of prayer, the couple decided against the procedure. But hospital administrators overrode the couple, telling Mr. Miller their policy was to try to resuscitate babies of over 500 grams (1.1 pounds).
Today the child, Sidney Miller, is 12 years old and at the center of a contentious court battle that is testing the balance between the responsibilities and rights of hospitals, parents, and their children.
At its core, the case raises a broad question: Who gets to make decisions for a fetus when its future outside the womb is uncertain?
While the outcome will officially affect only Texas, lawyers in the case say it is being closely watched as similar cases begin to crop up in other states. Declining treatment at the so-called "end of life" has received much attention. But debate about declining treatment at the beginning of life has been rare.
But to her dad, who tickles Sidney's feet just to watch her laugh, this case is not about setting legal precedents. It's simply about this: "Who will take care of her if something happens to me or my wife?"
The couple's case against the Woman's Hospital of Texas is currently being considered by the Texas Supreme Court.
"My daughter will never be able to walk or talk or do any of the things that normal children do," he says. "She was not born handicapped. She was handicapped as a result of the treatment alternatives that were prescribed over our express objections. Those people made that decision and walked away from it. Well, we can't walk away from it. And now we want to make sure she is cared for for the rest of her life."
The issue has become increasingly complex as medical science has evolved. Babies today are alive and healthy at ages and weights that seemed impossible a decade ago. Some hospitals have enacted policies that use birth weight, gestational age, or lung capacity in determining when to attempt "aggressive resuscitation" procedures. Others let parents make the decision when the baby is on the edge of viability.
"The truth is, no one really knows what's best for kids like this, and there should be no hard-and-fast rule," says George Annas, a health-law and bioethics expert at Boston University.
He suggests a trial period for extremely premature babies, known as micropreemies, such as 10 days on a ventilator. That way doctors could get a better idea of how the child will do and what problems it may face in the future. But that route is also problematic, admits Mr. Annas, because most doctors will feel compelled to continue with treatment once they've started.
"Doctors are dedicated to saving lives and, if given the choice, will go all out for everybody," he says. But "if it's a judgment call, then it should be the parents' call because they are the ones who have to live with the child."
John Robertson, bioethicist at the University of Texas in Austin and a consultant for the defense, disagrees. "Parents do not have the right to deny treatment necessary to keep children alive."
Maybe they should have such a right in certain cases, he says, but only after birth when doctors know how serious the problems are. "No one knew how serious Sidney Miller's disabilities would be. You simply can't predict that before birth."
A full-term pregnancy is 40 weeks. healthy micropreemies have been as young as 23 weeks - considered the edge of viability.
In an era when such successes remain rare, doctors are the ones most qualified to make difficult decisions in such cases, says Sheldon Korones, a professor of pediatrics and director of the Newborn Center at the University of Tennessee in Memphis. "If the supreme court rules in [the Millers'] favor, it will mean that doctors cannot apply their judgment in similar situations," he says.
Still, other experts say parents have strong claims as well."I think that it is really inappropriate to override the wishes of the parents, particularly with children like this," says Ellen Wright Clayton, a pediatrics expert at Vanderbilt University in Nashville. "They are the ones who have to care for the child."
Many hospitals, she says, believe they are bound by the federal Child Abuse and Treatment Act of 1984, or Baby Doe law, in cases like this. It required that states develop procedures to protect disabled infants with life-threatening conditions and to report instances of parental neglect, such as withholding treatment.
But that law was not designed with premature babies in mind, says Dr. Clayton, nor did it give doctors the authority to treat a baby without a court order.
According to the Millers' attorney, the hospital was required to get such an order before overriding the couple's decision. Lawyers for the hospital replied that the doctors were legally and morally obligated to save Sidney.
In 1998, a Texas jury found Columbia/HCA, the nation's largest for-profit hospital chain and owner of the Woman's Hospital of Texas, negligent and ordered it to pay $43 million to cover the cost of Sidney's care for life. An appellate court overturned that decision.
Now the Millers await a decision from the state's highest court. "Maybe Sidney was given to us because God knew that we'd care for her," says Mr. Miller. "That's all we're trying to do."