When the State Makes a Family Tragedy Worse

Theresa Ann Campo Pearson died Monday, and the subject is moot for now. But the painful consequences of her birth will be felt by her family for a lifetime, a lifetime her parents were hoping to prolong symbolically by donating her organs to other critically ill infants.

Theresa was born a week ago Saturday in Florida. Four weeks earlier, her parents, Laura Campo and Justin Pearson, learned that somewhere along the line from conception to birth, something had gone terribly wrong.

Their child suffered from anencephaly, a condition that originates in the earliest stage of pregnancy; a condition in which the brain fails to develop. Theresa was born without an indispensable part of herself; without the ability to see, hear or smell, to think or to feel. She was born with only a brain stem, allowing her heart to beat, her lungs to fill and her tiny 4-pound body to keep itself alive. She had a sweet little face, but the top of her head was missing.

Such a baby “(had) more in common with a fish than a person,” a Yale medical ethicist told a newspaper.

That something could go this wrong in the womb is a pregnant woman’s most primal fear. Swollen ankles, nausea, backache, the pain of labor--all the discomforts of gestation pale in comparison to the constant worrying that she could give birth to a child who arrives under sentence of imminent death.

A hard enough situation for parents to face, but the family’s grief was compounded when a judge refused their request to allow Theresa to be declared dead. Campo and Pearson were hoping to donate their daughter’s heart, lungs, liver, kidneys and corneas to other infants. If she were to die naturally, doctors said, her organs would deteriorate past the point of usefulness to others. Life supports were removed Sunday.

Anencephaly is uniformly fatal. There is no hope for a baby thus afflicted. Unlike a case where a patient clings to life in what is called a persistent vegetative state, no one can argue the possibility of a miracle in a baby born with no brain.

“She has no life,” said Laura Campo. “There’s nothing.”

Why would a judge turn down Campo’s and Pearson’s request? What purpose would be served, except to render Theresa’s organs useless as transplants?

No good one that I can see.

Why do we so arbitrarily draw the line at where we choose to play God? Why are we willing to prolong certain death and not allow a life to end gracefully, or take steps to end it to help others? How can you argue the “slippery slope” here? You either have a brain or you don’t.

“Death is fact, not an opinion,” said Circuit Court Judge Estella Moriarty when she turned down Campo’s and Pearson’s plea that Theresa be considered brain-dead. Under Florida law, said the judge, a person may not be declared dead while any part of the brain functions. (Most states, including California, have similar legal definitions of death.)

“I can’t authorize someone to take your baby’s life, however short, however unsatisfactory, to save another child,” said Moriarty.

But that was disingenuous. Had she chosen to, Moriarty could have redefined brain-death to include an anencephalic infant, as the parents were asking, and authorized doctors to remove her organs. It would not have been an easy decision, but it would have been a courageous one.

There is a tremendous and irrational fear in this country around issues of death and medicine. A family’s agony--the quotidian stuff of hospital visits and financial burdens and emotional upheaval--is the last thing we take into account when making public policy on these sensitive issues.

It is cold and it is calloused, but we simply do not trust family members to do the right thing.

We didn’t trust Karen Ann Quinlan’s family; we didn’t trust Nancy Cruzan’s. Both women were the subjects of protracted court battles waged by families wanting to remove life support or force-feeding so their daughters, in irreversible comas, could die. In both cases, because the Quinlans and the Cruzans fought tenaciously for what they believed was right for their children, the U. S. Supreme Court eventually ruled in their favor.

We are a society that cannot agree on when life begins, so I suppose it is not surprising we cannot agree on when it ends. And yet, at least those who oppose abortion can argue for some sort of potential, for what might have been. And at least those who oppose the cessation of life support for comatose victims such as Quinlan and Cruzan can argue for miracles.

What could they argue for in the case of little Theresa Ann Campo Pearson? She had no potential, only a waiting period before the inevitable.

Her parents have vowed to continue their fight. They want the law changed so that a “brain absent” baby may be considered brain dead in order to help save the lives of others. If they are lucky, they will persuade legislators or the courts that there is a humane way to resolve this conflict between the law and real life.

For the issue in this case, as Laura Campo put it after an appeals court upheld Moriarty’s ruling, is giving life, not taking it.