Difficult Decisions

Courage, Disability, Down Syndrome, Family Challenges, Inspiration, Parents Add 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?


2 Responses to “Difficult Decisions”

  1. Ruth Shaw Says:

    Jane, God bless you! You are an inspiration…compassionate as well as wise and intelligent. I have known several cases where the mother was advised to "terminate" the pregancy because the fetus was "defective." Then at the birth have a normal baby. A woman in our prayer group at Trinity UMC has a son with Downs syndrone. He is now 55 and walks with a cane and has aheart condition…They stopped by last Thursday and he came in smiling

  2. Jane Schulz Says:

    Thank you Ruth for your kind comments. I'm hoping we can influence some of those decisions! Like your friend, those smiles keep me going!

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