You may have noticed a comment on this blog posting from Jill, a mom we’ve come to know through our typically-developing kids’ school. She has a beautiful, happy son who happens to live with Down Syndrome. Our anonymous genetic counselor responded to Jill’s comments as well.
I was a little surprised at this person’s uncertainty at Jill’s sadness; the delight she has in her boy is obvious, and the routine destruction of such children makes her sad. Makes me sad as well.
But what really surprised me was that I felt I understood some of his or her motivations more clearly. I have also been motivated in certain similar ways, and still struggle to kill the root of sin attached to them.
Things like, fear of what other people might think:
“What may appear to be balanced from the counselor, may seemed biased and opinionated by the couple” or “Presenting information that a couple does not want to hear is often considered unbalanced.”
A child’s life is being considered for destruction, and the baby has no advocate because the counselor does not want to be perceived as biased.
Things like, its up to somebody else to deal with the problem:
“Many couples have preconceived notions about what these conditions are and, perhaps, more awareness needs to be presented to the general population prior to any screening or diagnostic tests.”
Well, it isn’t happening; you are now the person who has the opportunity to educate in ways that might make everyone uncomfortable. Letting people live in their preconceived notions isn’t neutral and non-judgmental, especially for that child.
I understand both very well. Pride and fear are very strong motivators.
Stuck in pride and fear, supported by a discipline that bases itself on cool neutrality, this poor person is trapped. And I’m going to guess, would entirely disagree at being trapped.
For to set the mind on the flesh is death, but to set the mind on the Spirit is life and peace. For the mind that is set on the flesh is hostile to God, for it does not submit to God’s law; indeed, it cannot. Those who are in the flesh cannot please God. Romans 8:6-8
Let us pray that God would delight in opening this person’s eyes to the beauty of Jesus Christ. And may we hear about a bold, innovative genetic counselor someday, unafraid to proclaim not just opinion but truth, to encourage deeper engagement with the finality of certain decisions, with the happy result of more children being allowed to live.
And I really mean that. I was much farther away from God than this person has communicated. It is all a work of God, as summarized nicely in this quote from Spurgeon:
I believe the doctrine of election, because I am quite certain that, if God had not chosen me, I should never have chosen Him.*
*Thank you to Randy Alcorn who tweeted that on Tuesday.
The Works of God 
This topic is very fresh for me. Last Friday I had my first OB appt for my third pregnancy. About half the conversation time was taken up with genetic screening info.
Even after I said I didn’t need any extra testing, I received a script for a cystic fibrosis screening. I don’t know anything about cystic fibrosis. Maybe there’s something they can do to treat it in the womb or something. I’m going to ask next time. But I was disturbed by the line on the script that read, “I attest that this patient has been given informed consent about and had given consent for the test(s) I have ordered.” I’m not sure why the physician signs that instead of the patient.
So, all that’s to say, I’ve been thinking about this a lot this week, and here’s a few thoughts:
-This is a topic you can’t be neutral about. That’s the problem. It doesn’t work to say the doctor or counselor is presenting all sides and letting the parents decide. Because, if the parent views that unborn baby as a person, it’s offensive to suggest termination, no matter how gently and graciously you say it. For a pro-life parent, it’s the same as having your 10 year old be diagnosed with cancer, and the doctor calmly mentioning, “If you would like, we could end things now.” There’s no way for that not to be offensive.
And, on the other side, there’s no way for our offense at the suggestion to not be offensive to the person who suggests it (or who has carried it through). No matter how graciously we state it, the implications are clear- If that baby is a person, terminating the pregnancy is murder. And for people who feel they are helping others, that is supremely offensive. They feel so judged. It’s just that drastic, that black and white.
-I found it fascinating how many commenters on the motherlode blog identify themselves as pro-choice, yet, because of their personal experience with disability, were offended. Despite all the struggles and trials of disability, these children are still valuable, still joy-bringers. And you don’t have to be a Christian to see that if you know them personally.
-I also found it interesting that there was no mention of adoption. I tried to comment about that on the motherlode blog. I’m not sure if it didn’t work or it is still being moderated. But it seems like that’s a large missing piece. DS babies are in demand in the adoption world. In areas of this country, there are waiting lists for parents who want to adopt Down Syndrome babies. Do doctors and genetic counselors know that? Do they tell their clients?
-Finally, I think there’s a point to be observed here. DS is one of the biggest disabilities diagnosed prenatally. Consequently, the abortion rates for DS are extremely high as mentioned in the motherlode article. And, interestingly, those who have DS children are less likely to get divorced than couples without a disabled child (as you’ve said on this blog before.) Maybe a happy life and a good marriage are not the consequence of easy circumstances. Maybe the people who choose to keep their DS babies have a greater tendency to have the qualities that bring true happiness- commitment, compassion, and very often religious conviction.
Keep writing, John. The long, the short — you are both vessel and tool of the Lord wisely and diligently communicating with power. I am grateful for the discussions here that challenge me daily to KNOW and LIVE the truth with the love and grace of Jesus even in the midst of overwhelming circumstances.
[…] 23, 2010 by John Knight Bethany was kind enough to add to the discussion on genetic screening yesterday. She also wrote about it on her blog and added some questions of her own: Is it too much to […]
I have been thinking of how to respond to the genetic counselor’s views on her “counseling” responsibilities for a week. In the end, the one thing that occured to me was that it was my responsiblity as a parent of child with Down Syndrome and a believer in Jesus Christ to speak for my son and unborn babies just like him. While the counselor agreed that people need more information about Down Syndrome, she indicated that if her clients had preconceived notions about their babies condition it was not her place to challenge that belief. If that is the case, then it becomes absolutely essential that parents and loved ones of children with Down Syndrome do the educating of the general population. In the end, I determined that her response was a call to arms. A wake-up call if you will. And for that I am thankful.