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Delivering A Diagnosis to New andExpecting Parents

Delivering A Diagnosis to New andExpecting Parents

862 signatures 138 to reach 1,000
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Started by Anonymous 19 years, 2 months ago
The Prenatally Diagnosed Condition Act is a bill co-written with the National Down Syndrome Society and introduced to Congress by Senators Ted Kennedy (D-MA) and Sam Brownback (R-KS) in 2005. Details of the bill are available at this link: http://www.govtrack.us/congress/billtext.xpdbill=s109-609 In summary, this bill states that a health care provider would provide up-to-date, scientific, written information concerning the life expectancy, clinical course, and intellectual and functional development and treatment options for a fetus diagnosed with or child born with Down syndrome or other prenatally diagnosed conditions and also provide referral to supportive services providers, including information hot lines specific to Down syndrome or other prenatally diagnosed conditions, resource centers or clearinghouses, and other education and support programs as further described. By Signing this Petition you are in full support of getting this bill passed. This vital information would be provided to expecting parents at the time their health care provider delivered the prenatal diagnosis. A defining purpose of this bill would be to change the way in which doctors and genetic counselors have traditionally delivered a prenatal diagnosis. Currently, in spite of the efforts of many Down syndrome support groups to provide new, updated, encouraging pamphlets, brochures and information to OB/GYN and Perinatologist\'s offices, rarely do any of these resource materials actually reach the expecting parent. You can watch my Video Explanation Here: http://www.youtube.com/watchv=6uJ5vZFAdDM This bill has yet to be enacted upon and remains stalled in Congress. It has been long enough! The petition presented here, with enough signatures, can help persuade Congress to pass this bill. Together, by signing this petition, we can help bring about this needed change. When thousands of women were asked what kind of support information they had received at the time of their prenatal diagnosis, over 90% stated \"None!\" Overwhelmingly, doctors are either subtly or overtly, strongly suggesting termination of a pregnancy if the prenatal diagnosis is considered \"serious\" in the doctor\'s own opinion. Many doctors do not act responsibly when giving expectant parents a prenatal diagnosis knowing that this is one of the most vulnerable times in the parent\'s lives. Doctors are currently allowed to do and say as they please with no accountability or repercussions. When doctors knowingly ignore and/or do not make available all up-to-date information, options and choices to expectant parents and instead offer only their own opinions, it becomes reckless behavior by the doctor. This is not responsible medicine and it absolutely needs to be changed. There is an urgent need for an outlined standard of procedure to be put into place that all concerned medical personnel adhere to when delivering a prenatal diagnosis to expectant parents. Additionally, there needs to be accountability when it comes to terminating life. We should all be concerned about this issue because it affects all of us as human beings. With prenatal testing becoming more and more accurate, imagine what the future could hold for us The medical community cannot create the \"perfect\" baby even though it seems they are currently trying to do so. We all know perfection is defined individually and should not be allowed to be dictated by one particular group of people over another. Let\'s try and get this bill signed and passed. Senator Brownback is running for President of the United States and this is an issue he and many other\'s in Congress feel passionately about. There is nothing like power in numbers. All of us, regardless of whether or not you have a child with a diagnosis, should really care about this issue. There are couples, right now, sitting in doctor\'s offices all over the country, scared about what the future holds for their unborn baby. Statistics say that they will most likely terminate given the worst case scenarios that they will receive, never knowing that there is a whole world of support and resources out there. Let\'s help them! We can lower the 90% abortion rate for those prenatally diagnosed with Down syndrome. We can make this change by providing current, up-to-date information and education. This is not a Pro-Choice or Pro-Life issue. Rather, this is an issue about responsible education and providing accurate, updated support and information. You can also make an enormous difference by personally calling your state\'s senator\'s office and telling them you want the Parentally Diagnosed Condition Act passed. Here\'s the link where you can find your state senator\'s contact information: http://www.senate.gov/general/contact_information/senators_cfm.cfm Thank you for taking the time to read and sign this petition! Please be sure to share your personal story in the comments section because all of our stories are very impactful. Also, please pass this petition on to everyone you know as every signature counts! Please Come Visit Me At: http://www.expectingparents.blogspot.com OR at: http:// www.jadensjournal.blogspot.com Or at: http://www.healthiestlife.blogspot.com You are also welcome to e-mail me at: http://[email protected]

Updates

June 30, 2007

The petition reached five hundred signatures today. This collective milestone confirms that many people agree parents deserve accurate and current information at the time of a diagnosis.

Reached 500 supporters

June 28, 2007

Reached 100 supporters

June 1, 2007

6 Comments

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Anonymous
7 years ago Featured

I know there must be others that would like to adopt a down syndrome child like myself as well . I would love to get signatures of possible families willing to adopt DS children. This is my dream. But my health has to improve. I woukd fight to have a child now regardless. I am greatful for this opportunity to sign this petition. These children are Gods teachers . Every life has a purpose!!

J
Jessica Anderson
19 years ago Featured

My son is the best thing that ever happened to me. I wish the hospital staff had given us resources instead of acting like he was a burden. FIX THIS.

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Sarah Sanders
19 years ago Featured

When we got our diagnosis the doctor made it sound like the end of the world. Parents deserve real hope and accurate info not just doom and gloom.

D
David McCarthy
19 years ago Featured

Important bill. Knowledge is power and parents shouldnt have to hunt for support groups while they are still in shock.

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Amanda Greer
19 years ago Featured

Yes! We need better training for medical professionals. They need to see the human side of the diagnosis.

M
Mike Ortega
19 years ago Featured

about time! doctors are so out of touch with what life is actually like for these kids.

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