Baby case tests rights of parents

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.

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