Thursday, May 10, 2007

Perfection in Children

This is a letter sent to Dean Barnett who posts on Hugh Hewitt.


Thank you very much for your thoughtful and very personal commentary. It is perhaps even worse than you realize. Obstetrical care providers now have multiple tools which potentially reveal abnormalities in unborn babies. Triple screening and quad screening cast the net widely for a multitude of potential defects.

All this screening and testing is a double edged sword. As a neonatologist I fully appreciate the ability to prepare for the delivery of an infant with complex medical problems. This screening allows infants who will require higher levels of care to be identified and delivered at suitable centers. Ultrasound has been invaluable in this regard. It is relatively non-invasive and it presents what we believe to be a relatively minimal risk to the fetus and mother.

The obsession with “perfection” in pregnancies is, in my view, a result of many factors. To be fair to obstetrical providers, some of it has to do with legal considerations. More important, however, is that we have lost the ability to see the value in imperfection. Only perfection matters. Most of us deny our own imperfections (we are human) and cannot appreciate that a child, no matter how “different”, is a gift. In an age in which many children are raised by day cares, nannies or public schools, children have become a possession, albeit an important one, but a possession nonetheless. Why shouldn’t “it” be perfect?

As humans, decisions such as abortion are accompanied by a significant amount of emotional baggage, namely guilt. Society, including the obstetrical community, has gone to great lengths to mitigate this distasteful feeling. We assuage these feelings by the knowledge that “we are saving the unborn child from a life of suffering and pain.” Counselors made available to families with difficult diagnoses have great expertise in the pathology that accompanies a multitude of syndromes and genetic disorders. These counseling sessions invariably include the topics of mental retardation, cerebral palsy, and quality of life. Rarely in my experience are these potential parents ever exposed to families who have recognized the gift given them in an “imperfect child”, families who have made the decision to keep their child. You mention CF, Dean, and it is a great illustration of this conundrum. Let me mention another in more detail - Down Syndrome - as another great example of a potential diagnosis in which parents are often counseled without exposure to sources who can describe what life is like with a child with Down Syndrome.

Before my wife gave birth to our second child, she was placed in that most depressing of maternal categories, advanced maternal age (AMA), an ever increasing demographic in the obstetrical world. Routinely, AMA mothers are advised to pursue triple or quad screening for a variety of problems that increase as maternal age increases. We refused such testing.

We did obtain an ultrasound. As a neonatologist, I wanted to be sure that a resuscitation team would be adequately prepared if our child had cardiac or other problems. There were some “soft signs” on ultrasound that our child might be at risk for other problems. While these were non-specific signs that were not diagnostic of any specific disorder, it prompted the immediate response from our obstetrician that we should consider an amniocentesis to “rule out Down Syndrome.”

We explained to our doctor that we would not abort our child, did not wish to expose our baby to the risk of amniocentesis, and refused her recommendation. We were blessed with a beautiful daughter…who has Down Syndrome.

We do not see our daughter as someone with a disorder. She can be stubborn, has difficulty expressing herself, and will never be a part of the rat race we all run everyday. She is overjoyed with simplicity, recognizes beauty in everything, cannot walk through a garden without making 10-20 stops, and is not burdened by the frivolities that consume the rest of us “normal” folks. She has Down Syndrome, it is part of who she is, and it makes her a beautiful person.

We have had many people over the years actually ask (believe it or not), “Didn’t you have the test?” We pray for these folks.

Many obstetrical providers will say, “We do not encourage termination, not in my practice, not in my clinic.” The best estimate, however, is that from 70-90% of mother’s given an antenatal diagnosis of Down Syndrome abort their child. It is unclear to me how any reasonable member of the obstetrical community could make the case that large scale efforts are being made to offer parents a meaningful view of what life with a child with Down Syndrome is like given these statistics.

Still, there may be a glimmer of hope. Ultrasound has given parents a window into the womb, allowing them to see that what they are considering aborting is not a mass of tissue, but a really little baby. Religious and private organizations supporting adoption programs have offered alternatives to parents dealing with difficult decisions. While not a majority, there are medical providers out there who understand the unavoidable results of endless testing which emphasizes the pursuit of perfection. And there are many families who have been blessed with the knowledge that life, in whatever form, is a sacred gift.

Life never came with the promise of an absence of pain and suffering. Ask Jesus. We can only pray that more families will be given sight…the ability to see a blessing in what initially appears to be a very distressing disguise. We all must eventually come to terms with the fact that none of us is perfect. Given the current state of world affairs, and our determination to glorify self, it appears to me highly likely that the “imperfect” among us have a vital mission. They are sent to reveal to us our own humanity and imperfection.

It is hard enough to dodge and avoid such messengers as we pass them in the hallways or on the street. It is quite another thing to welcome them into our lives and homes.

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