Driving home Thursday night, I heard part of the Fresh Air program on Wrongful Birth. The interview covered a story featured in a March 12 NYT article by Elizabeth Weil (gotta register to read) on the birth of a child with Wolf-Hirschhorn syndrome (which includes mental retardation, physical disfigurement, inability to speak, seizures and respiratory and digestive problems) to a 31 year old woman & her husband. As described in the article, the prenatal care she received certainly does sound substandard (no fundal heights measured--even in the 3rd trimester.) However, the real issue arises when AJ arrives prematurely--too small, multiply-handicapped, medically fragile.
Weil's writing is as stark as it is disturbing:
What happened next in the years in which the Brancas came to love A.J. deeply and also to file a multimillion-dollar lawsuit claiming that Donna Branca's obstetrician's poor care deprived her of the right to abort him, sheds an uncomfortable light on contemporary expectations about childbearing and on how much control we believe we should have over the babies we give birth to. ...
As in many other realms, from marriage and its definition to end-of-life issues, those ethics and standards are being hashed out in the courts, in one lawsuit after another. And what those cases are exposing is the relatively new belief that we should have a right to choose which babies come into the world.
This belief is built upon two assumptions, both of which have emerged in the past 40 years. The first is the assumption that if we choose to take advantage of contemporary technology, major flaws in our fetus's health will be detected before birth. The second assumption, more controversial, is that we will be able to do something: namely, end the pregnancy if those flaws suggest a parenting project we would rather not undertake.
Parenting project. That describes all of us. It could also describe the undertaking, assignment (however we try to neutrally describe it) that has been joyfully received and accepted by our friends in NC, Eliza's parents.
We've been praying for Eliza's recovery from seizures, reliance on breathing machines, collapsed lung, etc. She has continued to improve in those areas, but it seems that God has defined a shorter stay here for her that her parents wanted/expected. See below for details.
Back to "Wrongful Birth," Weil adds, in a stark admission unusual for mass media:
...the ethical thicket ... is as thorny as ever. We may not want to give birth to disabled children, but at the same time we do not want to see ourselves as reproducing in a way that calls to mind prize cattle.
The moral quandary we find ourselves in pits the ideal of unconditional love of a child against the reality that most of us would prefer not to have that unconditional-love relationship with a certain subset of kids. ...
It is [the] observation [of a disability rights advocate], shared by many on both the left and right, that prenatal testing "is not a medical procedure to promote the health of the fetus. It is a procedure to give prospective parents information to decide whether or not to eliminate a possible future life."
The reasons to oppose termination are both obvious and subtle and not necessarily tied to abortion views in general. (The question of abortion rests on a single issue: is it O.K. to destroy a potential life? Termination involves an infinite number of heartbreaking queries that boil down to this: what about this life in particular?) Some argue that our desire not to raise impaired children is based on prejudice. Others claim that a choosy attitude toward fetuses brings a consumerist attitude toward childbearing and undermines the moral stature of the family. Still others maintain that the act of terminating impaired children drags us into a moral abyss, or its opposite, that raising children with impairments increases our humanity.
David Wasserman, a bioethicist at the University of Maryland, wrote a paper with Asch [a disability rights advocate] titled "Where Is the Sin in Synecdoche?" in which the two argue that prenatal testing is morally suspect because the system leads people to reduce fetuses to a single trait, their impairment. "Since time immemorial people have felt fear and aversion toward people with impairments, but these tests legitimize those fears," Wasserman says. Parenthood, according to Wasserman, is and should remain a gamble.
Having watched many parents gamble on handicapped and "typically developing" children gamble on how well their children will turn out, gamble on faith / morals / grades / respect / development of safe driving skills, I have to say that most parents I've watched seem to "get it," at least once they've had their kids. Children are a gift we unwrap--not something we predict. or on which we get warranties.
A final quote from the NYT article:
As Leon Kass, former chairman of the President's Council on Bioethics, has noted, in prenatal cases, often the only way to cure the illness is to prevent the patient.