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NEW-DS community-Open to all advice/suggestion

Im 11wks 3dys prego Dr. advised my fetus tested positive for downsyndrome from my blood test, meeting w/specialist next Wed 3/9. Any one results come P but baby delivered normal & healthy? How positive are results at this point? Parents/relatives w/DS what is your experience raising a child w/DS? Open to all advice, insights & suggestions.
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1227139 tn?1462338230
Hello Crystalgodess,

There are a number of false positive tests during prenatal screening but at this early stage of 11wks 3 days it's really hard to say just how unlikely the positive tests would be without all the details.  The only way to ever ensure a definite diagnosis is by testing methods such as Amniocentesis or CVS.  These invasive tests (at the moment) are the only way to know for certain whether the blood test results you obtained are accurate.  Many many mothers have had positive screens (which is what your blood test is, a screening test) that indicate a higher chance of the baby having Ds or any other Chromosomal issue.  But the same is also true, that a negative screen result doesn't mean that the baby doesn't have Ds.  
I would be sure at this point to see if your doctor intends to follow up with further screening or absolute testing before you make any other decisions.  I am a mother of a son who has Ds that learned via Amnio for no other reason alone but my age of 35 at the time.  All our sons prenatal tests came back "normal" and I opted to have the Amnio anyway.  We were very surprised when the results came back that he would be born with Ds, but I will tell you - it gave us a really great chance to educate ourselves and also prepare for our son.
Today, I run several support groups, online groups and websites because there simply isn't enough information that accurately describes what it's like to have a child with Ds or what to expect on a positive level.  I encourage you to visit my blog (as I do for all families who are either going through prenatal testing or have received a diagnosis of Ds):
In my website I discuss the everyday journey that we have been blessed to have since Hunter was born.  I have photos, videos and reviews of all kinds jammed packed in there.  I have many many references though my site which help to educate people as well.
One thing I would definitely say to you is, talk to people (me included) to get the "real" information.  Leave the doctors opinions for the health or medical issues and not the family, reality or truth behind Down syndrome.  Many doctors do not have up to date or positive information about Ds simply because they have been taught about Ds from a text book and those "older" insights are often negative and incorrect.  I am so happy to report that much of what doctors had originally mentioned to me about Ds was wrong.  Our son is smart, capable and very typical.  He has met every milestone as children do, and is the light of our lives.
I am further lucky to be able to educate, share and support people on the topic of Ds because of our son.  Many doctors are often surprised (which still surprises me to this day) when they meet our son.  In the past, (at his birth) doctors (four to be precise) would not believe that he had Ds and begged us to have him retested despite our Amnio results.  It goes to show that despite doctors being "experts" the real experts are the families and friends of people who have Ds.

What I would suggest to you is, if you know the details of your test, message me directly.  Often the early screening (at your time-frame) include NT measurements, blood testing and ultrasounds.  Only after those test results are correlated, do they then recommend further screening or testing if the odds of your baby having Ds are outside the typical numbers.  If you have those numbers, I'd be happy to take a look.  Doctors and OB's do follow protocols of recommendations on next steps but what I have learned on this journey is that some doctors do pass by the steps of recommending further screening and jump right to suggesting terminations without having a bonafide or actual diagnosis.  That in itself is frightening when they know so little about Ds and if they knew the truths about Ds, they might not be so quick to offer terminations.  However, having said that, the choices that people make are difficult and very personal.  I never judge a person's decision but I do often say, no matter what decision any person makes, hopefully it's an informed one.  Please please let me know if I can help to answer more questions you might have.  I know first hand how stressful prenatal testing can be, especially when you might be facing something that we all (at first) probably know nothing but stereotypical information about.

In addition to anything I have mentioned, please keep in mind, that while I or others may have extensive knowledge in many areas, you should always seek professional medical advice from your own physician, as it pertains to medical conditions or concerns.

Good luck, and if you have any other questions that I can help you with, please feel free to message me directly.

Sandi (Dragon1973)
MedHelp Genetics Community Leader;
Children - Special Needs Community Leader;
Down syndrome Community Leader & Ds Group Forum Founder/Moderator;
MTHFR Group Forum Founder/Moderator;
Pregnancy: June 2011 Community Leader
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