JUSTIN FLEISHER was 2 years old on the 28th of August.
He could go any time now. And it's been that way for almost 18 months.
"He's in his own little world now," says his mother. "He fades in and out of consciousness . . ."
Abortion. The word itself conjures up passion and violence. To the women's movement it is a symbol of a woman's right to control her own body. To others it is infamy, the murder of an innocent human being. To many -- and Ellen Fleisher used to feelthis way -- it is something one does not think about, something that happens to someone else, something one most likely wouldn't choose for oneself, but if someone else wanted it, well, different strokes . . .
There have been few issues in this country so divisive, so searing, so fraught with bitterness. It is the dilemma of our age, sometimes simmering below the surface, sometimes erupting into our consciousness. Today's confrontation with the issue is political, a product of the anti-abortion stance of the Reagan administration, and by the president's appointments, especially that of Dr. C. Everett Koop, Reagan's anti-abortion nominee as Surgeon General -- and of the opposition to these appointments.
But there are also the personal tragedies that can thrust the issue into the public consciousness with an emotional intensity quite separate from the rhetoric of either political position, no matter how impassioned. Mostly, these rarely come to public notice. Once in a while, though ...as in the case of the pregnant 12-year-old victim of a gang rape. She ran away from home because her mother would not countenance the aborting of the pregnancy that resulted from the rape. Last week, after the Oklahoma Supreme Court ruled she could terminate the pregnancy, lawyers in Oklahoma disclosed that she had changed her mind and would carry the pregnancy to full term. ("I don't know whether somebody put pressure on her or what," the court-appointed attorney was quoted as saying, "but she just feels like she just doesn't want the abortion ...")
Most of those for whom the controversy has overwhelming personal consequences are caught in the middle, hostages to controversy. Ellen Fleisher is one of these. Her son Justin never had a chance. Yet he began like any other baby, planned and loved. And he thrived and grew for several months, cooing, crowing, smiling -- until the sinister enzyme deficiency hidden in his genes began, in effect, to turn his brain to fat.
Justin has the disease they call Tay-Sachs, a recessive genetic trait of some Eastern European Jews. There is no cure. Death is inevitable but often excruciatingly slow. Some Tay-Sachs children can live, with heroic measures, as long as six or so years.
One particular cruelty of Tay-Sachs is that its onset comes after several months of normal development. A baby has begun to respond, to know his parents, to turn over, chew on his toes.
"And then," recalls Ellen Fleisher, "one day I noticed he wasn't turning over. I knew something was wrong."
At 9 months, Justin was still not sitting up.
"Listen," sayshis mother, "I'm the oldest of seven children, and I just felt there was something not right. He had no interest in toys. He was just . . . different.
"When he Justin was 9 months old, my husband came with us to the doctor and the doctor said, 'Look at his good trunk control,' and my husband said, 'Well, if he has such terrific trunk control, why doesn't he sit up? Why isn't he crawling? Why doesn't he hold himself up on his hands?'
"Then we were sent to the neurologist."
The other particular cruelty of Tay-Sachs is that the baby's deterioration is as gradual as his development had been.
"We had him home until he was about 18 months old. He was a very demanding baby . . . There were days when he wouldn't do anything but cry, and there's no consoling these children." The Fleishers live in suburban Virginia. Justin is now at the Northern Virginia Training Center for the Mentally Retarded.
"When he was 10 months he started losing his head control, stopped playing with his hands, stopped putting the pacifier in and out of his mouth . . . He was a bad feeding problem, taking an hour to get two or three ounces of a bottle into him. Then he had constipation problems, and he started seizuring.
"But he could still smile and laugh and make nice to us, and that was rewarding. Then he began to lose his vision, his responsiveness."
Fleisher tells her story in a flat, almost unemotional tone, trying, but ultimately without success, to remain dispassionate.
She finally says, "It's a terrible, heartbreaking situation to sit back and watch your child die and there's nothing you can do."
Ellen Fleisher was pregnant with her second child at the time of that conversation in May. She was awaiting the results of her amniocentesis, tests on a small amount of her amniotic fluid that had been withdrawn three weeks before, waiting to see if the child she was carrying had the disorder. The chance was 1 in 4 that he would.
Shelearned the next day that her second baby was Tay-Sachs free. The Fleishers' second son was born at the end of August, a few days after Justin's second birthday.
Ellen Fleisher is no longer indifferent to the abortion controversy. She is frightened and passionate. Even when the new baby had quickened within her, she desperately tried to hold herself apart. Had the results of the tests been positive, she would have opted for abortion. In fact, had abortion not been an option, she says, her dark eyes shadowed, "There is no way I could have gotten pregnant again."
"I was never really inclined to think about abortion one way or another until Justin was diagnosed," she says. "We felt it was something we would never have to encounter so we never discussed it, really . . . But in this instance, where it is such a black-and-white situation, where we know you can detect the Tay-Sachs through amniocentesis and protect yourself against this kind of a tragedy, we feel that the option of abortion is really our only way of having another child, having a family. We just think we should have the choice.
"Don't let me mislead you that it would be an easy decision, my having an abortion. I think that is something the anti-choicers think is like making a dental appointment. It isn't. It would be still a loss, but not the same kind of loss as loving the child and holding the child and giving it a name and nurturing it, only to sit back and watch it die. I can't even describe what we go through . . ."
And at the last, her voice breaks.
Mary Vollono's is another voice in the abortion controversy.
For her, abortion is out of the question. So is amniocentesis because she and other pro-life activists believe that it can serve no valid purpose and can only lead to abortion.
Vollono has three living children. She has been pregnant seven times and expects to be pregnant again.
Three times she has given birth to babies who are called anancephalic. They were born without skulls, and virtually without brains. It is a condition of such gross deformity that the baby rarely lives beyond a few hours. It is "incompatible with life," the doctors say.
Mary Vollono's first baby was born in New Jersey. She'd had baby showers, and they'd bought all the baby things.
"When it came time," she recalls, "they put me in a room and left me to myself. I think the doctor knew. At one point, they told me there would be no baby to take home.
"I never saw the baby. It had multiple problems with the anencephaly. I never saw it.
"You know, there are no support groups for girls who go home empty-handed."
Her second baby was premature. Under two pounds, it lived only four days.
But it was the efforts to save "this tiny thing" that got Mary Vollono interested in the right-to-life movement.
She later had a normal pregnancy and then a second and she recalls, "Then I got really cocky."
The fifth pregnancy ended in miscarriage. And then, during the one after that, "I started getting big sometimes a sign of abnormality and I started getting scared," she says. "It was near time and I went in for a sonogram, and the technician had a hard time finding the baby's head, and I had this terrible feeling.
"I sat there with my mother and I said, 'What are we going to do if this baby's retarded?' And my mother said, 'We're just going to take him home and love him.'
The next day I called the priest and I told him that 'I'm scared because I'm having a baby and I'm afraid he's going to die and it's going to be a relief.' I was consumed with guilt."
This baby, too, died within a few hours.
When she became pregnant once again, Mary Vollono wanted a doctor who was, as she puts it, "sort of pro-life; someone who wouldn't urge amniocentesis. But then I felt I could handle anything. It no longer mattered if the baby survived. It only mattered that my husband and I could survive and we could do it together.
"It was a matter of personal integrity," she says. "A matter of dignity that no matter what my child was, I would protect my baby. I wouldn't be the one to eliminate the baby."
Mary Vollono came to this conclusion: "I was dignified, elevated, because I could endure this suffering. And with the last baby, what really mattered was that I and my husband did not lose faith, lose sight of the fact of what we were doing -- giving life a chance.
"Part of the abortion thing," she says, "is that people can't handle things . . . I think we are going to have another baby. If the baby is healthy, we'll rejoice. If not, well, we have three healthy children. This is the time it really takes strength, to really see it through.
"I know I sound like I'm moralizing, but we never have to apologize."
To Dr. William Colliton, it is simple.
"My whole training and experience makes it abundantly clear that abortion is the killing of innocent life," says Colliton, chief of obstetrics and gynecology at Holy Cross Hospital in Silver Spring.
"I had been active in the civil rights area," he says, "but when abortion reared its head as a reality, I abandoned that and took up an activist role in the abortion debate."
Colliton founded the right-to-life movement in Maryland.
He speaks with absolute conviction.
"The biologic data is very very clear that our lives begin at conception and the only question is how do we, as a society, deal with that fact . . . None of us were given the guarantees of normalcy."
He objects to amniocentesis, the screening for birth defects, "when no possible therapy can be offered and all one is doing is trying to seek out those who we feel are possibly less normal . . . It is not a healthy pastime. The next step is to make that judgment when they're born," he says.
He agrees with Dr. C. Everett Koop, President Reagan's nominee for surgeon general, that there is a connection between abortion and euthanasia. "You read about mysterious deaths among the aged at nursing homes. To me it is not a great mystery."
Vernadine Boykin's story is different from that of either Ellen Fleisher or Mary Vollono.
She is black, brought up in the Washington ghetto, but in a home so strict that, when she became pregnant at the age of 16, she did not know it -- but she was so frightened of her mother she'd not have told her in any case.
She had German measles about two months into the pregnancy, but again, it would not have occurred to her to mention it, even if she had known she was pregnant.
"The baby was born with cataracts, pneumonia and a hole in her heart," Boykin recounts today, 17 years later.
"When she was 2 months, we found out she was profoundly deaf.
"After she was born, they asked me was I on drugs or was I smoking any. I said I just got into life and this is what happened. It took me two weeks to remember I had German measles in the second month. They told me if I'd told my mother, they could have performed an abortion. I only knew about my friends having illegal abortions in the basement for $25 and one of my girlfriends died . . .
"Now this baby was a part of me. At 6 months they took off her cataracts and she wore glasses, but when she was 6 she fell off the bed and hit her head and blocked her sight completely."
Finally, nurses at the Hospital for Sick Children discovered that the child, Valerie, had learned sign language when she was deaf and sighted, and they began to communicate with her by touch. She began to get better and was found to have a quick intelligence. She had, somewhere along the way, been diagnosed as severely retarded.
She was doing well at the Sharpe Health School -- she was 12 years old by then -- when Vernadine Boykin's so painfully constructed world for her "impaired" but beloved daughter was shattered.
Five years ago, Valerie was raped in the school cafeteria. She went through a period her mother finds difficult to recount. The rape threw her into several years of severe and bizarre behavior. She mutilated herself. She would beat herself and "scream and holler" for hours at a time. She stopped eating and her weight dropped to 45 pounds. She lost control of her elimination functions. She would tear out her hair, tear off her clothes. "We had to have her drugged all the time."
Vernadine Boykin sued the District of Columbia, but the case has been postponed over and over and over. Now, she says, it is not scheduled for hearing until sometime next year.
Gradually, Valerie began to come out of her bad period, thanks, says her mother, to God and the people at the Hospital for Sick Children. She is now in the acclaimed Overbrook School for the Blind in Philadelphia, where, her mother says proudly, "she is doing wonderfully." The D.C. government is responsible for her tuition.
Meanwhile, Vernadine Boykin, 33, has no job -- she had worked for the government, but was caught in the Reagan job freeze, and has no place of her own to live. She has a son, who is 11, and they stay now with Boykin's mother. Vernadine Boykin receives $225 a month in public assistance.
She worries constantly about Valerie's future.
She loves Valerie and talks about "the good times."
But now she says, "I think I would have had an abortion if I'd known . . ."
Dr. David Margulies, an obstetrician-gynecologist who is a consultant to an abortion clinic in Montgomery County, has been performing abortions for some years.
"My feelings," he says, "are very much because of my training in a charity hospital in the South. I saw many acutely ill women, occasionally one of whom died, from complications of illegal abortions. And many extremely sick who could be saved only by massive surgery, sometimes sterilizing them.
"From that standpoint, medical and then philosophical, I just feel no woman should be forced to have a baby by the mere fact that she conceived.
"The problem," says Margulies, "is not abortion. The problem is unwanted pregnancy. Once pregnant, a woman is faced with a poor choice -- having a baby she doesn't want or an abortion. In a fair number of cases, a woman would be better off having the baby, but once she has made an informed decision, I do not feel she should be forced to have a baby or an illegal abortion."
Margulies reflects a widespread concern that women will have abortions whether they are legal or not; that if they are illegal, the rich will flee the country and the poor will return once again to backroom butchers. To the kind of abortion Vernadine Boykin knew of in her youth.
Margulies expresses some bitterness at what he sees as a certain hypocrisy among the ranks of the anti-abortion activists. "Where," he demands, "are there people on that side willing to adopt defective babies or mixed-race babies? It's nice to put up nice creamy white, Waspy babies, but what of the others?"
John Larsen, associate professor of obstetrics, gynecology and genetics at the George Washington University Medical Center, sees another sort of inconsistency.
He is concerned with the current move by government officials to ban any federal health plan from paying for abortions, except when the mother's life is endangered, on the grounds that it will save money.
"In fact," he says, "they don't save money at all because even normal birth and pediatric care is more expensive than it is to have an abortion. Moreover, if you eliminate abortion benefits, you're going to wind up with more live births. To the extent that they are also live births of those with genetic damage, you have extremely expensive care you must continue to render.
"If they want to make a Moral Majority statement that they're opposed to abortion, that's one thing; but I am unfavorably impressed with the attempt to stop abortion with this type of economic reasoning. I think it is a better thing to address the abortion issue directly than to try this financial manipulation." (Indeed, opponents of the anti-abortion move won their first legal challenge on Friday when Judge Gerhard A. Gesell wrote that the move appeared to have been "prompted by ideological considerations ..." and overruled the attempt to eliminate coverage for abortions in at least one federal plan.)
The debate rages -- in hospitals, in clinics, in election booths, in Congress, in the federal government, in the White House. Pro-life forces are as opposed to amniocentesis as they are to abortion on the grounds that the one leads inevitably to the other.
But there is room for dispassion, for disinterest.
Even for hope.
For 10 years, Dr. John Fletcher, bioethnicist and Episcopal minister, has made medical ethics his principal occupation.
He currently is completing a book, "Coping With Genetic Disorders as a Guide for Clergy Counseling."
Speaking of the divergent views expressed by Ellen Fleisher and Mary Vollono, he says:
"To my mind, they are both acceptable points of view, and neither should be judged negatively. There is something strong and something weak about both points of view; and if you look at the total picture, you will see that before 1968 there was literally nothing a couple at risk for genetically impaired babies could do except refrain from having children.
"There are studies of the families of people who have an affected child and, depending upon the strength of the marriage, they can cope for better or for worse. But after the development of amniocentesis, all the studies that have ever been done on couples who use it lend themselves to the conclusion that it helps them, and not in the least by permitting a woman to go through a pregnancy, which happens 95 percent of the time, with the security that that particular baby is not affected with the disease they fear."
Fletcher's work, including a long-term study of 25 couples from the beginning of their genetic counseling to six months after the birth of their baby, showed him that "for anyone who is a carrier of a genetic disease, even if the people are not officially religious, they still feel punished by God or by fate. They feel stigmatized by the universe. And they need spiritual help.
"The strength in the views of those opposed to abortion is that one day, in my view, there will be possible therapies for the fetus as it is growing. It would be right to cure, rather than to abort.
"If," says Fletcher, "you start from '68, where there was nothing, you can accept abortion as an interim solution for a completely irresolvable dilemma. And the dilemma is this:
"It is a good thing to want to have a baby.
"It is also a good thing to want to protect oneself and one's family from harm.
"If you get a positive diagnosis to a prenatal test, you can't have both things.
"Most Americans, when they're asked, feel that it is acceptable to abort when you have a serious genetic disease of the fetus. But that's not the end of the story, because the other important thing that is happening is that physicians and scientists who were active in prenatal diagnosis are beginning to turn to therapy. I believe in the next 10 years you are going to see as much progress with fetal therapy as you've seen with diagnosis. And that will right the balance. Reports of in-utero operations are already beginning to appear in medical journals.
"The strength of the anti-abortion argument is that if you believe the fetus is human, there is something unjust about deciding they are expendable on the basis of a genetic disorder.
"The strength of the pro-choice position is that although love can redeem a disaster, it's unreasonable to prevent people from preventing a disaster if they can do it.
"We should see both sides and live with both these women Fleisher and Vollono and be willing to support both. And we should have social policies that do not condemn either because we will work it out if we have enough patience and don't sabotage ourselves on the issue."