has anyone been "screen positive" that did NOT end up with a positive Down syndrome result?

Re: has anyone been "screen positive" that did NOT end up with a positive Down syndrome result?

• michellexm member

  February 2014 edited February 2014

  Technically, a lot of people should screen positive for Downs Syndrome and not actually have Downs Syndrome. Screening positive only means you have elevated risk; it doesn't say your child has Downs. For example, for NT scans, screening positive only means you have a greater than 1/300 or so chance of Downs. This means out of 300 babies born to women with this risk, just one should have Downs.
  
  The screening is called "positive" because it means your risk of Downs is higher than your risk associated with invasive testing like CVS or amniocentesis. Work with your doc to determine what further testing to do and try to stay calm! I hope this helps!
  
  I read your other post, too. If you actually want better information on which to make your decision, forget what your doula says. There are better, more accurate tests that are usually offered if your screening test is positive.

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• Jbosarge85 member

  February 2014

  Having a baby that has downs is not the worse thing in the world. I think it's sad that so many people hear diagnoses of Down Syndrome and run to abort. I have a niece that has Down Syndrome who is the sweetest most innocent child you could ever hope to meet. She has been a huge blessing in all of our lives and we wouldn't trade her for 100 "healthy children"

  
  

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• michellexm member

  February 2014 edited February 2014

  Jbosarge85 said:

  Having a baby that has downs is not the worse thing in the world. I think it's sad that so many people hear diagnoses of Down Syndrome and run to abort. I have a niece that has Down Syndrome who is the sweetest most innocent child you could ever hope to meet. She has been a huge blessing in all of our lives and we wouldn't trade her for 100 "healthy children"

  I don't want this to come off like I'm being a jerk, but this was not the question being asked. While your point is one to validly consider, first the poster needs to get good information regarding what she's looking at and how reliable her testing really was before make any life changing decisions, either way.
  
  It's important to remember that regardless of your personal experience with people with Downs Syndrome, carrying this child to term is not up to random people on a message board either. It's a choice she and her husband need to make after thinking it through thoroughly. She shouldn't be made to feel there is a wrong and right choice in this situation; these are both lawful and valid choices. Not that I even see any hint in her posts that this is a consideration at this point.

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• [Deleted User] member

  February 2014 edited February 2014

  I screened negative for Down's Syndrome and I had a baby with Down's Syndrome.  Found out at birth.  Having a Ds is not a big deal.  She is the easiest and most loving baby.  I would not trade her for all the tea in China.  Good Luck.
  

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• [Deleted User] member

  February 2014

  Not for Down syndrome, but for spina bifida. They did a Level II ultrasound to examine the baby and all was well (this was with my older son). For me, extra testing is worth it either for peace of mind, or to better prepare for what is coming.

  
  

  Good luck *hugs*

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• AutumnBonfire member

  February 2014

  LeaLupins said:

  Not for Down syndrome, but for spina bifida. They did a Level II ultrasound to examine the baby and all was well (this was with my older son). For me, extra testing is worth it either for peace of mind, or to better prepare for what is coming.

  
  

  Good luck *hugs*

  Same here. I panicked during that time until the ultrasound and then felt much better. I suggest further testing so you can have a better answer, no matter what that answer is. 

  
  

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• alohababy14 member

  February 2014

  I screened positive but level 2 ultrasound looked fine. Will find out when he gets here, I suppose : )

  
  

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• Jbosarge85 member

  February 2014

  Having a baby that has downs is not the worse thing in the world. I think it's sad that so many people hear diagnoses of Down Syndrome and run to abort. I have a niece that has Down Syndrome who is the sweetest most innocent child you could ever hope to meet. She has been a huge blessing in all of our lives and we wouldn't trade her for 100 "healthy children"

  I don't want this to come off like I'm being a jerk, but this was not the question being asked. While your point is one to validly consider, first the poster needs to get good information regarding what she's looking at and how reliable her testing really was before make any life changing decisions, either way. It's important to remember that regardless of your personal experience with people with Downs Syndrome, carrying this child to term is not up to random people on a message board either. It's a choice she and her husband need to make after thinking it through thoroughly. She shouldn't be made to feel there is a wrong and right choice in this situation; these are both lawful and valid choices. Not that I even see any hint in her posts that this is a consideration at this point.

  
  

  In her post right after this pretty much asking the same thing she mentioned a friend who tested positive for down syndrome and got an abortion and then "had a perfectly healthy baby after" maybe I should have posted it on that one but it just bothers me that everyone thinks that having a baby that has down syndrome a death sentence and so awful. I'm sorry you were offended by it but that's my opinion. 

  
  

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• TallMomma29 member

  February 2014

  I haven't personally (I opted not to do genetic testing), but I have known two people who screened positive, were then given a high chance that their babies had down syndrome, and then it turned out the babies did not have it.  It's all probabilities, and right now there is a very high chance that your baby does not have ds, even with the positive screening.  Definitely do more testing so you can get a better answer, but it's still way more likely than not that your child does not have ds!

  
  

  
  

      

  
  
  

  
  

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• michellexm member

  February 2014 edited February 2014

  Jbosarge85 said:

  michellexm said:

  Jbosarge85 said:

  Having a baby that has downs is not the worse thing in the world. I think it's sad that so many people hear diagnoses of Down Syndrome and run to abort. I have a niece that has Down Syndrome who is the sweetest most innocent child you could ever hope to meet. She has been a huge blessing in all of our lives and we wouldn't trade her for 100 "healthy children"

  I don't want this to come off like I'm being a jerk, but this was not the question being asked. While your point is one to validly consider, first the poster needs to get good information regarding what she's looking at and how reliable her testing really was before make any life changing decisions, either way.
  
  It's important to remember that regardless of your personal experience with people with Downs Syndrome, carrying this child to term is not up to random people on a message board either. It's a choice she and her husband need to make after thinking it through thoroughly. She shouldn't be made to feel there is a wrong and right choice in this situation; these are both lawful and valid choices. Not that I even see any hint in her posts that this is a consideration at this point.

  michellexm said:

  
  

  michellexm said:

  In her post right after this pretty much asking the same thing she mentioned a friend who tested positive for down syndrome and got an abortion and then "had a perfectly healthy baby after" maybe I should have posted it on that one but it just bothers me that everyone thinks that having a baby that has down syndrome a death sentence and so awful. I'm sorry you were offended by it but that's my opinion. 

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  I'm not offended. I just don't think your personal opinion about whether or not to carry to term is relevant or helpful.
  

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• stacyf20 member

  February 2014 edited February 2014

  After my NT scan I was given a risk of 1 in 301 for Down syndrome due to an absent nasal bone. At my A/S scan, they found two soft markers, a very short nasal bone and a femur to head ratio that was in the 30th percentile.  This raised our risk to 1 in 100.  We then had a cell free fetal DNA test done which came back "negative."  This is technically still considered a screening test but the genetic counselor and my OB/GYN are comfortable saying they believe my baby does not have Down syndrome.  

  
  

  The worst part of the experience was the perinatologist we saw for the A/S.  She had an absolutely horrid bedside manner and immediately began talking about how much longer I had to consider terminating the pregnancy and I better hurry with diagnostic testing.  She left the room with a pouty face saying, sorry I don't have good news for you.  What?? A 99% chance my baby is fine??? And we're jumping right to termination.  Her manner completely freaked my husband and I out. While I wouldn't terminate for Down syndrome, having a doctor scare you like that can make you question everything, and it is a lot to take in and process.  

  
  

  ETA: my younger sister also had two soft markers for Down syndrome during her pregnancy and her baby was not born with Down syndrome.  She didn't opt to do any further testing prior to birth.  

  

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• melitabonita member

  February 2014

  You can do more non-invasive testing that will give you more definitive results. These would be Harmony, Panorama, MaterniT21, and I believe there are others that were suggested to you in the other thread.
  
  We screened high risk for chromosomal and decided to do the Harmony test due to the fact that it isn't invasive, is relatively painless (getting blood taken is never completely pain free haha). If our baby had T13 or T18 we would have chosen termination, but for us we decided if our baby has Down syndrome we would continue pregnancy.
  
  I am aware that statistically we are in the 10% here, 90% of people who find out their baby has T21 choose to terminate.
  
  Get some more definitive testing done. That way you know what to expect. Either do an amnio or a CVS depending on how far along you are, or do the blood test. Thats my advice.
  

  
  

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• MrsWallick member

  February 2014

  DH was screened positive for Down syndrome. His parents chose not to do further testing and he does not have Down syndrome.

  
  

  BFP #1: 3/23/13, EDD: 11/22/13, MC: 4/2/13

  Convinced it was a boy and missing him every day!

  BFP #2: 10/25/13, EDD: 7/3/14, Grow baby Grow! Anabelle Rose born 6/6/14 

  
  

       
  

  
  

  August Siggy Challenge: If Babies Could Talk

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• alygoo615 member

  February 2014

  am aware that statistically we are in the 10% here, 90% of people who find out their baby has T21 choose to terminate.
  
  
  I believe in the US, it's 67% who terminate for Downs Syndrome. In Europe it's much higher... 90ish percent.

  *TW* Losses Mentioned
  9.6.12 - Crazy J entered the world
  4.30.14 - Sweet Angel Micah John lost to T18 at 7 months pregnant
  2.8.16 Miscarriage at 6 weeks
  4.30.16 BFP *stick baby stick*
  
  
  

  
  

  

  
  

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• melitabonita member

  February 2014

  alygoo615 said:

  am aware that statistically we are in the 10% here, 90% of people who find out their baby has T21 choose to terminate.
  
  I believe in the US, it's 67% who terminate for Downs Syndrome. In Europe it's much higher... 90ish percent.
  

  I didn't know that Makes me feel less like an "outsider".
  

  
  

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