WHATEVER HAPPENED TO BABY JANE DOE?

                WHATEVER HAPPENED TO BABY JANE DOE?

Seven years ago, the national press was much taken with a battle
between the United States government and the parents of a New
York infant invariably described the press as severely
handicapped or more often, severely deformed (as if she were the
Elephant Man). She was a spina bifida child. [Of course, the
"Elephant Man" has the same right to live as "Baby Jane."--EA]

Spina bifida is a lesion in the spinal column. If it is not
repaired through immediate surgery, there is danger of infection
that can lead to permanent brain damage. Usually accompanying
spina bifida is an accumulation of spinal fluid in the brain. If
a shunt is not inserted to drain the fluid, the pressure on the
brain often leads to mental retardation.

The parents, however, chose to give the child--known in the
headlines as Baby Jane Doe--only "conservative treatment." No
surgery, and for a long time, no shunt. After all, as nearly all
the reporters and nearly all the editorial writers assured their
readers and viewers, it really did not matter what was done for
Baby Jane Doe.


Either way, she wouldn't live all that long and as long as she
did live, she would be profoundly retarded and in constant pain,
would always be bedridden, would never be able to learn anything,
and would never be able to recognize anyone, even her parents. In
grim sum, her quality of life would be so low--the press
implied--that her departure would be a blessing of her parents
and, of course, herself. ["Quality" is inherent in life itself.--EA]

The only problem with this prognosis was that a number of leading
pediatric neurologists--based on what they knew of baby Jane
Doe's condition--told me it wasn't true. I talked with, among
others, Dr. David McLone, chief of neurosurgery at Children's
Memorial Hospital in Chicago. He said that his extensive
experience with spina bifida children gave him confidence that if
she was treated at his hospital, she would grow up to have normal
intelligence and would be walking, probably with some bracing.

Also much interested in the case was Dr. C. Everett Koop, then the
Surgeon General--and for many years before, one of the more renowned
pediatric surgeons in the country. He wanted to see the hospital
records, which had been sealed because of so much national attention to
the case.



The federal government brought suit--under Section 504 of the 1973
Rehabilitation Act--to find out from the records whether Baby Jane Doe
was being discriminated against because of her handicap. Section 504
says that where federal funds are involved, there can be no such
discrimination. Therefore, said the government, handicapped infants--
like all other infants in the nursery--must get appropriate medical treatment.

The legal team for the parents included the attorney general of New York
as well as the New York Civil Liberties Union. They maintained that the
privacy rights of the parents and of the infant must be protected at all
costs against "Big Brother."

Supporting the government--though there was little notice of these
allies in the press--were the American Coalition of Citizens with
Disabilities, the Association for Persons with Severe Handicaps, the
Disability Rights Education and Defense Fund and the Disability Rights
Union.

Unlike the many able-bodied Americans, the disabled know that treatment
based on "quality of life" can strip you forever of all your civil
liberties, and your life.




The government lost in the courts all the way. The privacy rights of the
parents and infant getting "conservative treatment" prevailed. The
"intruders" were routed.

In the years since, it has been learned that the child's real first
name (we've never known the last) is Keri-Lynn. And in a recent Newsday
story by Kathleen Kerr, it turns out that Keri-Lynn is not in pain, that
she laughs and plays with her parents and other children, and recognizes
her parents with no trouble at all.

But she cannot walk. She attends special classes; her intelligence is
considered between low-normal and educable.

What would have happened if the government and Dr. Koop had won in 1983
and Keri-Lynn had received what is called "aggressive treatment"?
Kathleen Kerr of Newsday asked Dr. Koop. ["Aggressive treatment" is ANY
treatment given a potential euthanasia victim.--EA] He said to her, as
he said to me, that if Keri-Lynn had been able to get full treatment
through the anti-discrimination provisions of the federal Rehabilitation
Act, "she would be in a considerably different condition today."










It never occurred to the American Civil Liberties Union, which was
protecting the rights of the parents to be the sole decision-makers in
the case, that Keri-Lynn was not a fetus and had her own due process and
equal protection rights under the Constitution. By their own principles,
the civil libertarians were on the wrong side. Keri-Lynn was being
discriminated against because she was handicapped. But the ACLU saw her,
and still does, as being an extension of Roe v. Wade.



















(Nat Hentoff, The Washington Post, 12/11/90) [For further information
about Keri-Lynn's story, contact CURE, 812 Stephen St., Berkeley
Springs, WV 25411, 304-258-LIFE.]

Reprinted with permission.