Comments on: Brownback, Kennedy collaborating on Down syndrome bill http://www.patriciaebauer.com/2007/12/03/brownback-kennedy-collaborating-on-down-syndrome-bill-944/ Disability News | PatriciaEBauer.com Wed, 24 Nov 2010 22:50:59 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: Nancy Iannone http://www.patriciaebauer.com/2007/12/03/brownback-kennedy-collaborating-on-down-syndrome-bill-944/comment-page-1/#comment-474 Nancy Iannone Tue, 04 Dec 2007 04:44:37 +0000 http://www.patriciaebauer.com/2007/12/03/brownback-kennedy-collaborating-on-down-syndrome-bill/#comment-474 Thanks Patricia for posting this. I see this bill as the common ground for those who are pro-life and those who are pro-choice. This bill is PRO-INFORMATION, and there is a great need for it. I have seen numerous examples of doctors giving little or no information, or worse yet inaccurate information and/or pressure to newly diagnosed parents in a difficult situation. And the research shows that doctors as a whole are not handling the diagnosis of Down syndrome very well. Even my wonderful and supportive doctors gave me no information on Down syndrome, and offered me a termination 4 times after I had indicated I would continue with the pregnancy regardless of the results. Although they gave me excellent prenatal care and a joyous birth experience, I could have used a pamphlet, a link to a national organization, and an absolute acceptance of my decision without the reminders. With the increasing sophistication of prenatal testing, there will be fewer people with Down syndrome. But those who join our ranks in the future will be be made up of a greater percentage of those with a prenatal diagnosis. A poorly handled diagnosis delivery can increase feelings of isolation, self-consciousness, resentment, grief, and anger. Many of us are interested in protecting these parents. If perinatologists, OBs, and genetic counselors are going to be the gate keepers of this information, they need to deliver it responsibly, with accurate sources for information, access to experienced parents if they wish, and true neutrality. Thanks Patricia for posting this. I see this bill as the common ground for those who are pro-life and those who are pro-choice. This bill is PRO-INFORMATION, and there is a great need for it. I have seen numerous examples of doctors giving little or no information, or worse yet inaccurate information and/or pressure to newly diagnosed parents in a difficult situation. And the research shows that doctors as a whole are not handling the diagnosis of Down syndrome very well.

Even my wonderful and supportive doctors gave me no information on Down syndrome, and offered me a termination 4 times after I had indicated I would continue with the pregnancy regardless of the results. Although they gave me excellent prenatal care and a joyous birth experience, I could have used a pamphlet, a link to a national organization, and an absolute acceptance of my decision without the reminders.

With the increasing sophistication of prenatal testing, there will be fewer people with Down syndrome. But those who join our ranks in the future will be be made up of a greater percentage of those with a prenatal diagnosis. A poorly handled diagnosis delivery can increase feelings of isolation, self-consciousness, resentment, grief, and anger. Many of us are interested in protecting these parents. If perinatologists, OBs, and genetic counselors are going to be the gate keepers of this information, they need to deliver it responsibly, with accurate sources for information, access to experienced parents if they wish, and true neutrality.

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