Friday, June 21, 2013

Down Syndrome


“If They had a Voice”: Down Syndrome and medically challenging prenatal diagnoses

By Kathy Ostrowski, Legislative Director, Kansans for Life

somethingextraBill Maher’s insult of Sarah Palin’s son, Trig, who has Down syndrome, was awful enough but it was made even worse when members of “The View” defended Maher’s tasteless, wantonly cruel, and mean-spirited comment. But rather than stay angry, instead please watch a four-minute video, “If They had a Voice.”

With Jason Mraz‘s wonderfully appropriate song, “I won’t give up” functioning as the musical score, this poignant video takes the form of questions from (and pleas by) a 16-week old unborn child who has with Down syndrome, to his mother. “I can offer the world beautiful things… Give me a chance with you or another family. Let’s see what I can be.”

The video was produced by Jack Barr. In a text that accompanies the video, he is brutally honest in summarizing why he made the video.
“When my 2-year-old daughter was born, I told my wife I did not want her. I spent an entire year depressed because I believed everything society told me about having a daughter with Down syndrome. Now two years later she is the joy of my life. She is not a monster, she is not ugly, she is not retarded, and she is not a burden on our family. She is a beautiful little girl that brings joy to our daily lives. I understand the fear of having a child that is different, so I want to encourage you to consider taking the road less traveled and see the beautiful things a child with Down syndrome can show you.
I don’t want to spoil the video, which is a spellbinding experience, enhanced by Mraz’s song. There is this great stanza:
I won’t give up on us
Even if the skies get rough
I’m giving you all my love
I’m still looking up

So what happens to a family when the obstetrician gives a diagnosis of Down syndrome, or Spina Bifida, or other medically challenging situation? Is the pregnancy (to borrow from another line) suddenly a falling star, losing all brightness? As the video reminds us, the doctor can tell of the physical “differences” from the extra chromosome and forget the positives.

What Kansas lawmakers passed into law this spring as the Pro-Life Protections Act (HB 2253) enables the state health department to better assist the pregnant mom and her family at the time they are likely confused and upset about the health of their unborn child. It is at this point that they need concrete information and contacts for community support systems for special needs so that the fear of the unknown does not lead to abortion.
Although this provision of HB 2253 received no media attention, it was modeled after the federal Prenatally and Postnatally Diagnosed Conditions Act which increases the provision of scientifically sound information and support services to patients receiving a positive test diagnosis for Down syndrome or other prenatally and postnatally diagnosed conditions. Although the law was passed, it did not receive adequate public funding.

The video “If they had a Voice” beautifully articulates how parents should be considering medically challenging prenatal diagnoses. It is up to our culture to treat all life with respect and to pass laws enabling the better angels of our nature to guide us in crisis.
Editor’s note. We will be talking about “If They had a Voice” again tomorrow.

Source: NRLC News

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