Search Results for: our story

American Idol Caleb Johnson, you just lost your biggest fan. Here’s how to win her back.

This week Caleb Johnson is in the final four for the contestants on American Idol. But, because of a stupid comment, he just lost his biggest fan. Here's how to win her back. [This post has been updated; scroll to the bottom for updates]. Continue Reading

What’s your view on prenatal testing for Down syndrome?

Researchers at Standford want to know what you think about prenatal testing for Down syndrome and other genetic conditions. Continue Reading

The Shape of the Eye: our diagnoses do not define us

The Shape of the Eye was originally published in 2011. This Spring, it was re-issued in paperback and is enjoying the attention it deserves. A memoir by George Estreich about many things, but prompted by the birth of his daughter Laura, it has much to share for all of us. Continue Reading

Outlawing abortion won’t help children with Down syndrome? History might suggest otherwise.

Earlier this week, the New York Times Motherlode blog featured a post by Alison Piepmeier with the headline: "Outlawing abortion won't help children with Down syndrome?" Much of what she wrote echoed points I have made previously, but there is a distinction based on historical examples. Continue Reading

An Open Letter to NDSS, NDSC, GDSF on Down syndrome prenatal testing resources

Global Down Syndrome Foundation (GDSF) and the National Down Syndrome Congress (NDSC) recently announced the publication of a pamphlet for patients going through prenatal testing for Down syndrome. It sparked discussion through a blog post by Dr. Brian Skotko, which was soon responded to in a joint press release by GDSF, NDSC, and the National Down Syndrome Society (NDSS). This is an open letter from concerned parents, professionals, advocates, and Down syndrome (DS) support group leaders who Continue Reading

What materials did your OB give you about Down syndrome?

When the American College of Obstetricians & Gynecologists (ACOG) changed its recommendations about prenatal testing for Down syndrome in 2007, it emphasized that obstetricians should be "well-informed" about Down syndrome and provide the "natural history" of Down syndrome when delivering a diagnosis. What was your experience? Was your OB well-informed and did they provide you accurate information about living a life with Down syndrome? I ask the question because studies have shown many Continue Reading

Persistent challenges: bigotry and ethical prenatal testing

A visit to National Park sites, a presentation to medical professionals in Kansas City, a violent protest in Charlottesville, and a news report out of Iceland all came together in less than a week as a reminder of the persistent challenge of our bigotry against our fellow human beings.  Continue Reading

Top Posts of 2016: Down Syndrome Prenatal Testing

Here are the top 5 posts (based on views) from 2016:  Continue Reading

Different is not defective

Today is World Birth Defects Day, chosen for 3/3 representing the statistic that about 1-in-33 births will be born with a birth defect. Let's see how some are celebrating #WorldBDDay. Continue Reading