March 29, 1992

A BABY'S LOST LIFE AN UNWINNABLE BATTLE

JIM HANER And CHRISTINE EVANS Herald Staff Writers

Herald staff writers Pamela Ferdinand, Ronnie Greene, Scott Higham, Linda Roach Monroe and S.A. Terilli contributed to this report.

Theresa Ann Pearson came to life with a scream.

It surprised her parents. Laura Campo, a waitress, and Justin Pearson, a cement worker, hadn't expected so much from their daughter.

She had no brain, no skull, no scalp -- only a gaping hole at the top of her hollow head.

Doctors had warned them. They knew what their daughter would look like. They knew she might breathe but not smell, touch but not feel, live but not know it.

They knew she could not possibly exist for more than a few weeks. And they planned accordingly.

If they couldn't save their own baby, they would try to save another.

Then little Theresa screamed.

And suddenly, life was not so simple.

People do not like to fudge the distinction between life and death. Something so basic should be clear-cut; a seemingly easy question -- "At what point does life end?" -- ought to have a definitive answer. The trouble is, there is none. Not really. Or perhaps the real trouble is, there are several answers. Sometimes the law says one thing, while common sense and, some argue, compassion, seem to dictate another. When that happens, legal, political and ethical issues collide and there are no easy answers. Or decisions.

That is the case with baby Theresa.

Just eight days old, she is already at the center of a roiling national debate:

Though she lacks a brain, her other organs -- eyes, kidneys, liver, lungs, heart -- appear healthy. Her parents would like doctors to take them from their daughter and give them to other sick children, who, with a new liver or heart or kidney, might have a chance at life. There is a problem. "Harvesting" the organs would kill Theresa, and, although she will die soon anyway, mechanically aiding her death would be as illegal as shooting her.

Put another way: You cannot remove organs from a living infant. And, in the narrow definition set down in Florida law, Theresa is alive. Although she has no brain, she does have a brain stem, a stump at the top of her spinal cord that controls basic life functions. Her heart beats. She breathes in, then out. She lets out a scream, a pure reflex.

In short, she is not legally "brain dead."

To Laura Campo and Justin Pearson, it doesn't make any sense. How can a baby with no brain, no skull, no scalp, a baby who will never, ever have a single thought -- who doesn't even know she exists -- be alive?

That is why they took their fight to an appeals court, where they lost late Friday. That is why, this weekend, they sequestered themselves in their modest Coral Springs home to plan a Monday morning appeal to the Florida Supreme Court.

Of course, it might not do any good. Theresa could die before the justices decide.

It is the ultimate Catch-22. If they take the organs while the baby is alive, the procedure will kill her, which is against the law. But if they wait for her to die naturally, her organs will die with her. Even with life support, they already would be starved of oxygen and too damaged to be of any use to anybody.

Theresa's parents believe they are doing the right thing, but they want to know that other people believe it, too. Each day, desperately, they seek affirmation that, by asking a surgeon to cut into their baby, by asking that her organs be salvaged even as she expires, they are committing not murder, but a selfless act.

And that is why it meant so much to them when Connie Chung, who interviewed the couple from New York last week for a morning news show, said, "All our prayers up here are with you."

The first sign of trouble came on a Thursday in February.

Campo, 30 weeks pregnant, was flat on her back at the Broward Family Health Clinic in Fort Lauderdale, where she was enrolled in a prenatal program for indigent mothers. On the television screen above her bed floated the image of her fetus. She wanted to know its sex.

The technician ran his finger across the screen. He pointed out the liver. The heart. The stomach. The hands. The feet. The spine. The neck. And then he stopped.

A week later, she came back for another ultrasound test. The image was a cipher. Her doctor would have to explain.

"Something's not right here," he told her when she visited on a Monday.

"What's the matter?"

"It's the head. The top of the head."

The top of the head? What on earth could that mean?

Said the doctor, "We'll take another test tomorrow."

The next day, Campo was vomiting. Pearson drove her to the Coral Springs Medical Center, where nurses fed her intravenous fluids for dehydration. Then, she had another ultrasound. Everything looks fine, she said she was told. Come back tomorrow.

The day after that, Pearson dropped her off at the hospital. Another ultrasound. This time, everybody was talking about the baby's head. It didn't show up on the screen. Where was it?

Someone called Pearson at work. He returned to the hospital. And there he held his hysterical wife's hand while doctors told them the truth:

The head didn't show up because there was no skull -- or brain -- for the sound waves to bounce off. The head was hollow, like a carved-out pumpkin. The condition had a name, anencephaly. Doctors do not fully understand the cause. It might be genetic, or it could be from a lack of a vitamin B, folic acid.

Campo, who had her stomach stapled nine years ago because of obesity, says she took vitamin supplements during pregnancy. She tried to eat well. But her normal eight-ounce stomach capacity had been reduced to two, making it difficult for her to handle more than half a sandwich at a time. Still, her other pregnancies had been normal, so she had tried not to worry.

The diagnosis came too late for an abortion or induced labor. Campo would have to carry the fetus full-term.

That night, Campo and Pearson huddled together at home and tried to think things through. Although their lives had not been easy, they had never before encountered anything like this.

Campo, 30, born in a small Rhode Island town, helped raise three younger siblings after her father died. Pearson, also 30, grew up the youngest of seven children in a two-bedroom cabin in rural Ohio. His father died in a steel mill accident when he was a baby, and he looked after his mother until her death eight years ago.

Then he moved to Florida, where he met Campo, a waitress at the Feedbag restaurant in Coral Springs. Pearson found work on a cement crew and soon they moved in together, sharing the rent and eventually producing two healthy children, Ashley, 3, and Justin, 4. It was a simple life.

The night of the ultrasound test, Campo telephoned her friend, Ginnie Abraham. They had a long talk. Campo recalled a television show, something about babies with no brains, something about donating organs.

Campo repeated the conversation to Pearson. Maybe, they thought, something good could come from their heartache. Maybe, if they donated Theresa's organs to other children, she would live on, through them.

Then an odd thing happened. The next morning, they picked up the newspaper from the front step and saw an article about Les Olson, director of organ procurement at the University of Miami.

Said Campo: "We thought we were being sent a message from God or something."

More coincidences followed. Campo saw a Donahue show on the subject. A friend mentioned that 60 Minutes had done a piece.

"We're not what you would call religious," Campo said, "but we both definitely believe in God. And when stuff like this starts happening to you, you've got to start wondering if maybe your life is being taken over, like God or some other higher power wants you to do something."

Eventually, it was decided. Campo would have a Caesarean. Not because that would be best for her. But because that way the baby, with its tender, malformed head, could be lifted whole
from her belly, its organs intact. Doctors would try to salvage her liver and heart and kidneys for other children.

Many people are unable, or unwilling, to reach the same conclusion. Nationwide, there is a chronic shortage of organ donors. The ultimate measure of the problem, said Olson of the procurement program: Last year, 54 South Florida families refused to allow doctors to take the organs of their loved ones, even though they were technically dead. (Eighty-five
families said yes.)

"We're talking about people who were shot through the head, people who had their skulls crushed in motor vehicle accidents or suffered massive brain aneurysms," Olson said. "There is just no way, no hope, that they will ever come back; it is an absolute certainty that they will expire as soon as you turn off the life support systems.

"But families are in such deep denial at that point. They're sitting there looking at the face of a person they love and they will not listen to a word you're saying."

Campo and Pearson listened. As they struggled with the reality of Theresa's condition, some 350 gravely ill children across the country were waiting for organ transplants. The couple wanted to help.

Wayne DiGiacomo, an obstetrician affiliated with Broward General Medical Center, where Campo was to give birth, explained the odds. Even if Campo submitted to a Caesarean, there was still an 80 percent chance that her baby would be born dead. And even if the baby wasn't, there was still a 50/50 chance that she would expire minutes after delivery -- too soon for her organs to be saved.

Most likely, all would be for naught.

DiGiacomo: "We're talking about a blue-collar working mother, with no special training or knowledge beyond what she picked up the media, having the incredible human insight and courage to make this decision on her own -- before she ever really consulted anyone professionally.

"A woman who chose to have an operative delivery that increased her own pain and suffering so she could increase this baby's chance of surviving. All on the slight possibility that the organs could be used to save other babies."

But Campo does not consider herself especially brave, or noble. She felt she had no choice.

"When they tell you your baby is going to be born without a brain, but that there is a slim chance her organs can be used to help four or five other babies live, it doesn't take a lot of smarts to figure out what you should do.

"You have the baby. You hope for the best."

Campo and Pearson planned carefully for the big day. They tried not to think too hard about what would come afterward -- the empty crib, the silent house.

By now, they knew the odds by heart. The chance of stillbirth was great, the chance Theresa's organs could be salvaged incredibly slim.

At 9 a.m. on a Saturday, doctors slit Campo's abdomen. Then they reached in, and the almost impossible happened.

"When we pulled her out, the baby gave a spontaneous scream," DiGiacomo said, "and she started breathing on her own."

Her heart kept beating. And the law took over.