... As the parent of a child with Down syndrome, I know from experience that doctors, nurses, and other prenatal medical professionals are badly in need of accurate information about Down syndrome so they can deliver the life-changing news to expectant parents with as much clarityï¿½and as little biasï¿½as possible. For many families, and for many unborn babies, access to such information is literally a matter of life and death. ...
...This Consensus Group released an updated version of ï¿½Understanding the Down Syndrome Diagnosisï¿½ in 2010, making a free copy of the booklet available to anyone who requested it and posting a downloadable e-version online at www.Lettercase.org.
The appearance of the document, now frequently referred to as ï¿½the Lettercase booklet,ï¿½ was considered a major step forward in the quest to counter misinformation and equip expectant parents with the facts about life with Down syndrome.
ï¿½This booklet is the answer to the question, ï¿½What should be given to women when they get that prenatal diagnosis?ï¿½ï¿½ Dr. Brian Skotko told me recently. A medical geneticist and co-director of the Down Syndrome Program at Massachusetts General Hospital, Skotko is a familiar face to those in what might loosely be called the Down syndrome community thanks to his blogging and media appearances. He has a sister with Down syndrome, and was involved in the crafting and editing of the Lettercase booklet.
Not long after our conversation, an interesting and entirely unexpected thing happened. NDSC and NDSS, the advocacy organizations that had participated in the creation of the Lettercase booklet, turned their backs on the effort and, along with the Global Down Syndrome Foundation, published their own informational pamphlet aimed at expectant families.
Earlier this month, Skotko was quietly removed from the NDSS board, and both NDSC and NDSS scrubbed all links and mentions of the Lettercase booklet from their websites.
Why the sudden disavowal of the work they had previously supported? Skotko expressed bewilderment. He told me that no explanation had been offered for his removal from the NDSS board. In a blog posting, he claimed that the new pamphlet contained factual errors. He told me that ï¿½unlike other booklets out there,ï¿½ the Lettercase booklet wasnï¿½t ï¿½propaganda.ï¿½ When I asked him what he meant, he said, ï¿½Physicians need to make sure that they are presenting materials that are not lopsided or influenced by a condition-specific organization that just might be telling one side of the story.ï¿½ ...