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Howdy. We've moved from Cayce, but St. Elizabeth of South Rose Hill or Lizette de Waccamaw de Sud just don't do it for me.

Saturday, March 18, 2006

Life is a Gift--Period.

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.


Heather said...

Two notes
One: I don't care how good of a doctor you have, or how many second opionions you get - no amount o prenatal testing will accurately determine the truth about your child. They told my mother I would have downsyndrome. Anyone who knows me can pretty much agree I do not.

Two: Even though I disagree with aborting pregnancies on the merits of a possible impairment, it is a difficult choice for a parent to make. Babies are expensive - but it takes an awful lot of budgetting to take care of a sick child. Some parents know they are just not ready for that. I think that there is a lack of information about the possibility of birth defects and about other options if you realize that you absolutely cannot handle raising a special needs child.

It isn't like theo ld days where you can just leave the baby on the steps of the church and know that it will be rasied right. That's abandonment. What other forseeable route do these parents have if they are not up for the responsibility? I am not suggesting that they should continue with the abortion, but I honestly don't know who you talk to when you can't be a parent anymore.

St. Elizabeth of Cayce said...


You are correct that prenatal testing is often inaccurate--at least when done early enough for termination decisions to be made. One wonders how many perfectly healthy children are missing from our families... I'm glad you are here.

Babies are expensive, time-consuming, frustrating and wonderful. I've worked in pediatrics my entire career and have seen amazingly strong parents adapt to unforeseen challenges, challenges from birth defects, developmental disabilities, etc.

I once worked with an amazing young lady (whose life was hampered by the absence of her child's father) after the child developed blindness, deafness, profound mental retardation and partial paralysis following meningitis from an infection that we now prevent with baby shots.

She, like other parents of special needs children I've known, did not try the "parenting project" (there's that term again) alone. She got herself help from extended family, medical and developmental specialists, financial resources, etc. Was she exhausted? Yes. Was she sad? At times. She could never have predicted her life--but there was no question of the love for her child that I saw in her eyes.

You might be interested to know that, in trying to prevent murders of infants, many states have enacted laws allowing parents to leave their infants in safe places in the first 1-2 weeks after birth. These locations might include hospitals, fire houses, police stations, churches, etc. Even when these children have "special needs," there are always many people requesting to adopt.

And that's the A-word that is missing from so many discussions: it's the other option to abortion or abandonment.

Finally, when someone feels she cannot be a parent anymore, that's the time to call ANYONE! Get someone hold your child until you can think straight. Then look up Respite in the Yellow-Pages or on-line. There are folks who can give parents a breather--that may be all that is needed. For deeper problems, there are many, many social/religious agencies that can help.

Thanks for the comment.