Difficult Decisions

Courage, Disability, Down Syndrome, Family Challenges, Inspiration, Parents 2 Comments »

Although prenatal testing is widely used, it is not perfect. I have a friend who told me of her daughter’s unnerving experience:

The day started out as any other. She was 16 weeks pregnant with her second child. It was time for the monthly visit to the obstetrician. She was told there would be a routine test given called an alpha fetoprotein test. This could determine any abnormalities like spina bifida , anencephaly, Down syndrome, or other chromosomal problems. The test was given and she left the office to run other errands. A few days later, she was called and asked to come in with her husband to talk with the doctor. When they got there, he said it was the worst test he had ever seen since he had been practicing. He then explained to them all of the abnormalities that this child could be born with. He was very discouraging and told them that they could choose to have a “therapeutic reduction” rather than take a chance on a severely “handicapped” child. Without hesitation, they both said they would not consider that as an option. ” Therapeutic reduction” is the politically correct term for abortion. Their belief that this was a child would not allow that. So for the rest of the pregnancy much praying, reading, studying, and preparing was done. At the delivery there was on hand a neonatal specialist to evaluate and observe the abnormalities. A beautiful, healthy, perfectly formed little girl was born. She is now a lovely 14 year old young lady who is the joy of her family, her friends, her school, her church, and her community. What if she had been “reduced” ?

Other pregnant women whose test results are normal may give birth to a baby with Down syndrome. There are a number of blogs relating such experiences when the birth is a total surprise.An excerpt from a recent blog indicates the difficulty in accepting this revelation:

I knew the minute I saw her that she had Down Syndrome and nobody else did. I held her and cried. Cried and panned the room to meet eyes with anyone that would tell me she didn’t have it. I held her and looked at her like she wasn’t my baby and tried to take it in. And all I can remember of these moments is her face. I will never forget my daughter in my arms, opening her eyes over and over…she locked eyes with mine and stared…bore holes into my soul.

However, an investigation by the Associated Press concludes that some inherited diseases and chromosome aberrations are declining and others have nearly disappeared, a trend that is credited to the increased use of genetic testing either before or after conception. A growing number of people are getting tested for genetic mutations before they try to get pregnant, while increasing numbers are screening embryos and fetuses and continuing only with those that get a clean bill of health.

One biology professor at a noted state university views the termination of a pregnancy of a child with Down syndrome as a moral imperative. Many physicians and counselors are not well informed about Down syndrome and fail to present the positive views that many parents experience.

There is a contradiction in our society’s increasingly friendly attitude toward people with disabilities and its obsession with developing more revealing genetic tests. If we are so willing to screen aggressively to find these disabilities and then potentially abort the fetuses, what does that say about the value of the lives of those people living with the disabilities?

Abortion is a private, personal choice. Perhaps the dilemma could be softened if people were advised about other options, if they were given more information on which to base decisions. In our next segment we will investigate alternatives to “therapeutic reduction.”

It’s easy to tell when Billy has been looking at family photos.
He will always ask, “You member I played that toilet paper?”
We can’t imagine life without Billy’s presence.

What do you think about this issue? Can you suggest options?
Have you had to make difficult decisions?


To Be or Not To Be

Down Syndrome, Family Challenges 3 Comments »

Jane Schulz and her son, William Robert.

As pointed out in previous blogs, children and adults who have Down syndrome are contributing members of our society. They are essential members of families and communities; they are beautiful people. We have come a long way from the 1950s, when Billy was born. During this decade an estimated half a million of children born with Down syndrome were institutionalized, often under abusive and degrading circumstances. We have come a long way. And yet . . .

Since 2007 it has been recommended by the professional organizations representing obstetricians and gynecologists in the United States and Canada that all pregnant women be offered prenatal screening for Down syndrome. ALL pregnant women. Prenatal screening tests are now well on their way to being standard of care. Insurance companies are covering them. And since Down syndrome is not a condition that can be repaired in utero, it must be fairly assumed that the purpose of this testing is to allow – and urge – women to terminate their pregnancies, which is what has been happening about 90 percent of the time when Down syndrome is diagnosed prenatally. (Bauer, 2004)

Genetic testing pushes hot-button issues: abortion, embryo destruction and worries about eugenics – selective breeding to rid a population of unwanted traits. Yet it is touching a growing number of people. It is well known that as maternal age advances, the risk of Down syndrome increases. Pregnant women 35 years of age or older have for some time been routinely offered amniocentesis.The combination of maternal age and elevated serum alphafetoprotein (AFP) appear to be more efficient than either alone. However, such testing and predictions are far from perfect.

To be or not to be – what a question! In future blogs we will discuss the issues surrounding prenatal testing and explore other alternatives. Please join the discussion.

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