Part of a Plan: Creation or Elimination

James Bernard Gaffney Brainstorm. Politics, Policy & Culture of the Northwest October, 1997. p. 12-15.

Reprinted with permission from Brainstorm, granted by Bridget Barton Copyright © 1997 Brainstorm

Several years back, in a hospital in Bloomington. Ind. a tiny infant, Baby Doe, waited helplessly for doctors, the courts and the nation to reach a decision Baby Doe needed a routine surgical procedure to unblock his esophagus and allow him to eat. But the doctor who testified told the presiding judge that Baby Doe would have a "nonexistent" possibility for "a minimally adequate quality of life." Why? Baby Doe had Down syndrome.

In California last year, two major medical centers at first rejected 35-year-old Sandra Jensen for a heart-lung transplant she critically needed. Doctors claimed that Jensen did not have the required intelligence to care for herself during the recovery period. Why? She had Down syndrome. After a yearlong battle, Jensen became the first seriously retarded person to undergo the surgery when the Stanford University Medical Center relented.

I believe the doctors who initially rejected Jensen's case and who testified against surgical intervention for Baby Doc did not give their real reasons for doing so. The selective value placed on human life in the womb by the American medical profession now carries over onto these living examples.

There is a widespread attitude demonstrated by the American medical profession that the problem of Down syndrome has been remedied. The abnormality can be detected early during the mother' a pregnancy and the life of the affected fetus can be terminated before birth. The cases still around they consider accidents, caused by careless mothers who did not know enough to get proper prenatal care.

But Down syndrome has not prevented our 20-year-old daughter Karen from leading a rewarding life. She graduated from St. Mary's Academy, a Catholic high school in Portland, where she participated in all aspects of high-school life. She took a full load of classes, maintained a B average, and swam on the school swim team.

Karen continues to work harder than her peers, just to keep up; and although she realizes this, she does not complain. Like many other people with Down syndrome, she combines the limits of her intelligence with a heroic level of perseverance, though her accomplishments are rarely recognized and often discounted by those who do not understand.

Those with Down syndrome, a chromosomal abnormality, have lower IQs than normal, their bodies are smaller, and they are mentally and physically slower than most people. They also have distinctive features that make them recognizable as having Down syndrome by those who know about the condition, and as different by those who do not.

I reject the societal and medical implications that a Down syndrome life is somehow worth less than other human lives. This is backwards to everything I know. My daughter's life means more to me than my own. I reject the notion of a "remedy." Instead, I would describe it as a quiet genocide against people with Down syndrome.

It is a genocide with potential to spread to other vulnerable populations, but it is a genocide that does not have to continue unchecked. The step between amniocentesis, the prenatal test for chromosomal abnormalities, and the abortion of the fetus with Trisomy 21 — the technical name for the Down syndrome chromosomal event — does not necessarily follow.

Mothers over the age of 35 typically are recommended for amniocentesis, or when preliminary blood tests show potential problems. However, the procedure carries a risk of miscarriage in 2 percent of the tests performed. Because of other potential complication, such as hearing damage in surviving fetuses, the test is not accepted medical practice for all pregnancies. Many expectant parents refuse. But no one knows for sure how many refuse, because no records are kept. Nor are records kept on decisions pregnant women make after testing.

Accordingly, we are left with estimates. Based on my research. I believe one-in-four of the estimated 16,000-plus late-term abortions done each year involve Trisomy 21 fetuses. This means, for example, of the estimated 7,400 Trisomy 21 pregnancies in 1993, more than half were aborted. As modern medicine continues to "advance" in this area "elimination of the disease" will approach perfection.

The timing of the test in itself poses a problem for genetic medical advisors. Amniotic fluid samples, not drawn until at least 15 weeks of pregnancy can take 2-4 weeks of lab testing. If everything goes smoothly, the chromosomal condition of the fetus is confirmed by the 20^th to 22^nd week. Some fetuses are viable at 23 to 25 weeks. Most fetuses are viable at 26 weeks — the end of the second trimester. By definition, all therapeutic abortions of the identified Trisomy 21 cases are "late-term."

Right now, mothers' choices are influenced by members of the medical profession who see Down syndrome as a horrible burden on the families and on society in general. They are also influenced by the threat of monetary legal repercussions if a handicapped child is born on their watch. I have seen the type of background presentations geneticists use for "objective" background counseling information. Instead of just covering Trisomy 21, some will show outrageous pictures to expectant mothers whose wombs contain positive results. The photographs depict the most grotesque chromosomal disorders and deformities possible. Those images still burn in my mind's eye today.

I once was contacted by an expectant mother who was carrying a baby with Down syndrome. She found me from an earlier article I had written for a college alumni magazine. One of her calls came two days after her daughter was born. She cried as she told me that other than Down syndrome, her baby was perfect; "She has both of her hands, she has all of her fingers..." For weeks this woman not only expected to give birth to a child with Down syndrome, but she expected her child to be deformed as well.

For more than 10 years, my wife Barb and I have implored geneticists to let parents with positive test results meet with us and our daughter before making their decisions. No one ever has been referred to us.

Yet, ethical guidelines for medical genetics counselors routinely offer this representative advice: "Prospective parents may benefit from meeting families who have a child with the same genetic or chromosome disorder that has been identified in their fetus. In many instances parents of an older child with such a genetic or chromosome disorder can provide living proof to the prospective parents that having such a child is not necessarily a negative influence on the family and society."

It is unfortunate counselors have not turned to our family. My daughter has been a great relief to new parents of a Down syndrome child. She is a good public speaker and has traveled all over the United States to give talks and answer questions for parent and family groups. She also has given many talks in the Portland area. We regularly have new parents over for dinner to help them with the questions they have about what the future may hold for them and their child.

Our attempts to make this same type of contact with prenatal families through genetic doctors and counselors have met with zero success. We have networked with other families around the country through the national conferences we attend and get the same reports: None have ever been asked to counsel with prenatal families.

Given the increase since the late 1970s of "wrongful birth" and even "wrongful life" cases, this medical attitude becomes clearer. These are cases brought on behalf of parents or their child for misdiagnosis of abnormal birth situations, including Down syndrome. They seek monetary damages for the incremental costs of providing for a lower functioning child. Think of it: What doctor or counselor wants to convince a jury that they adequately explained enough of the consequences of being a parent of a Down syndrome child to make an informed decision whether to abort or raise that child?

I am a licensed attorney, although I do not practice in this area — nor would I. But were I advising a medical professional client, my purely legal advice to them would be to do everything you can to convince the mother to abort her child for conditions such as Down syndrome and many others.

Why? I can find dozens of cases where mothers who did not abort have sued successfully. I can find no case where parents successfully sued for the loss of their child after an abortion was performed. These lawsuits may explain why doctors are in a lose/lose situation. Nonetheless such lawsuits do not excuse the whisper medicine and failure to meet the spirit of ethical standards.

Even Jérôme Lejeune, the French doctor who invented the amniocentesis test, expressed grave concern that the test he created might be a potential tool of eugenics. But how to stop the steady technical/medical creep forward? I would advance the following three proposals:

1. Wrongful birth and wrongful life tort claims should be banned at the federal level.
2. Existing ethical standards for medical professionals practicing in the field of genetics should be enforced in spirit and as written.
3. Data should be collected and made available to the public regarding late-term abortions. Such data should confirm weeks of gestation, sex of the fetus, age of the mother, and results of genetic testing. The data should protect absolutely the confidentially of the patient and the medical professionals involved.

Human beings are not good at making God-like decisions, but there always are those who want to try. It seems so easy in the beginning: An abortion for the woman pregnant from rape or incest; assisted suicide for the cancer victim suffering constant, unbearable pain.

But then the reasons weaken ever so slightly until an expectant mother aborts her child because it is the wrong sex, or a suicide is assisted because there is no money left to pay medical bills. As these practices become accepted, society's attitude changes toward the next class of citizens to fall victim to the advances of modern medicine.

Tests are available today for 450 specific genetic diseases, among them cystic fibrosis, Tay-Sachs. hemophilia, cerebral palsy and Down syndrome. Some geneticists believe they can identify markers for things like heart disease, breast cancer, alcoholism, schizophrenia, and now, homosexuality. Many target groups have nervously tracked these genetic/medical "advances."

Following reports on the so-called "gay gene" linked to male homosexuality, a group of geneticists, theologians and ethicists meeting in Berkeley, Cal. signed a statement that reads in part:

"On the one hand, genetic predisposition may remove sexual preference from the list of behaviors that can be blamed on individual choice or on the behavior of parents. On the other hand, it may lead to a cry to develop 'cures' or eugenic measures to eliminate the predispositional gene, as have earlier studies of diversity between races lent misplaced credibility to discriminatory practices."

No kidding.

In a recent USA Today/CNN/Gallup poll, only 49 percent of adults surveyed found it morally wrong to abort a fetus for cystic fibrosis, a widely varying and not necessarily fatal condition. Thirty-nine percent did not think it would be morally wrong to abort a Down syndrome fetus.

Clinically, the chromosomal event called Trisomy 21 is described as a mistake or accident of nature. But I truly believe that people with Down syndrome are a key part of our Creators plan.

When we go out in public, Karen becomes invisible to most passers-by. Yet she carries secrets to happiness, fulfillment and love that I know other people seek. How lives like Karen's can be viewed as throwaway is beyond me. For all of my daughter's weaknesses, she also has incredible strengths. She has inspired me to do things I would not otherwise have had the strength to do.

She is so overlooked for the teacher she is — just because she looks like a child. The world races past her at greater and greater speed, with people trying to find the happiness she could teach them if only they would slow down. It is ironic that, just as human beings like Karen become more important to our society than ever, they are targeted for extinction by a misguided medical profession.

As a footnote, Sandra Jensen died last May from conditions not related to her successful transplant. As of Jensen's death, no other person with Down syndrome in the United States had received any organ transplant. Sandra never could understand why some people did not value her life the way she did. The decision in the Baby Doe case: the judge let Baby Doe starve and die. The Indiana Supreme Court sanctioned the decision.