I GOT A call recently from Dave Andrusko, editor of National Right to Life News and, at times, an intellectual sparring partner of mine on bioethical issues. He told me about a newspaper story about a little girl who once was at the heart of a landmark bioethics controversy -- Baby Jane Doe.
Andrusko believed time had proven him right and me wrong about Baby Doe. I ArthurCaplandon't agree, but maybe you do.
The news story describes a visit with Baby Jane Doe, whose real name is Keri Lynn. Despite serious mental and physical impairments, she is doing well. She lives on Long Island, N.Y., with her parents and 1-year-old sister.
Keri Lynn was born with spina bifida, a genetic defect that, in her case, resulted in paralysis, incontinence, damaged kidneys and significant brain damage. Eight years ago, the question of whether the baby should receive aggressive medical care was the subject of a titanic legal battle pitting the federal government, various disability groups, Surgeon General C. Everett Koop and some right-to-life groups against the state of New York and the baby's parents.
The doctors said it was very likely that Keri Lynn would never be able to interact with other children and would live in great pain. Her parents, Dan and Linda, decided not to allow the doctors to perform surgery to drain fluid away from their baby's brain. They wanted conservative care -- antibiotics but no surgery. The doctors accepted their decision.
But a nurse did not. She tipped off a lawyer active in the right-to-life movement that the baby was being allowed to die, and the Baby Jane Doe case began. The fight went all the way to the Supreme Court, which, in 1983, ruled in favor of the parents.
However, Congress later did enact a law, the Child Abuse Amendments Act of 1984, which says withholding care from a newborn who is not dead or imminently dying is child abuse. The law requires state child welfare departments to monitor the care of newborns. This so-called "Baby Doe Law" is up for renewal in the current Congress.
Much has changed in the years since Baby Jane Doe's case occupied the headlines. More has been learned about spina bifida. The physically impaired have fought hard to secure their rights. Disability is no longer so readily equated with a life not worth living.
Today, Keri Lynn is not in pain. She is able to interact with other people. Her parents and some health care professionals think it may be many more years before she will require institutional care.
Eight years ago, I argued that Keri Lynn's parents should have the right to treat their daughter as they wished, within the boundaries of reasonable medical care. Nothing they did struck me as child neglect or abuse.
Has Keri Lynn proven me wrong? If surgery had been done, would her level of disability have been less? Maybe.
In retrospect, there can be no denying that the level of misery predicted for Keri Lynn was way off the mark. And the battle
over her care did much to change attitudes among doctors, nurses and the public about the prognosis faced by kids with spina bifida and other congenital birth defects.
But I still believe that the federal government was wrong to interfere in Keri Lynn's care. Her parents, while choosing a conservative course, never abandoned her and certainly never neglected her.
Laws that presuppose a lack of love between parents and children are lousy laws. The fact that state child welfare departments have found no cases in which hospitals or parents have been guilty of abuse or neglect since Congress passed the 1984 Baby Doe law reinforces my view that it was and remains an unnecessary one. Telling neonatologists that they must aggressively treat premature and disabled infants is equivalent to passing laws requiring politicians to give long and windy speeches.
Keri Lynn is a reminder that medicine is an uncertain science. But the battle over her medical care is also a reminder that, in the face of uncertainty, parents are in the best position to make hard choices among medical treatments of uncertain efficacy.
That is what her parents said then, and the love and care they have given Keri Lynn show that letting parents decide is still best for children born with impairments now.
Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota, is a columnist for the St. Paul (Minn.) Pioneer Press.