2nd Trimester Check in, Week of October 10th

yelllow22 · October 2016

Thanks for your prayers and words of encouragement. This caught me completely off guard. I was seen for the 1st time at the Ob at 15 weeks because that was the soonest they could get me in. I was worried about missing my 1st tri screening so I stopped by the office at 13 weeks to ask if I should be seen sooner and they asked the Dr. and told me he said that since I had PGS done I shouldn't worry about it. I had my first appointment with him and he didn't recommend any tests other than the anatomy scan.
For my second appointment on Tuesday I saw the other Ob in the practice and she suggested the quad screen. I told her what the first Dr. said, she asked what they tested for with PGS (which made me feel she didn't know what PGS is) and I explained what I knew. I told her I wasn't sure about doing it because regardless of the result my decision wouldn't change and she said that even if I knew I would want to continue with the pregnancy it was good to know because it helps to prepare emotionally, find support groups etc so that made me go for it. In all honesty I had not researched about testing after I was told I didn't need them.
Today she calls while I'm working and tells me that the test showed I'm at risk for Down syndrome, she said that it's a screening test, not a diagnostic one so we needed another test to confirm and that the anatomy scan also would give more info. I was shocked and asked how accurate the test is and she said 80%. That didn't sound encouraging.
I was really shaken and left work, went to have blood drawn for a harmony test which they said would take about 2 weeks and managed to get them to do the scan. They found no markers, all the organs looked perfect.
I love my baby so much and nothing would change that, but fear took over me. After getting the scan, and reading about the quad screen I'm more hopeful... hope I have enough strength to get through this.
Hugs ...

2legbaby · October 2016

@yelllow22 big hugs to you! How stressful! I am more confident in your pgs results then this quad screen result. The error with pgs is only one to two percent from my reading and with a 20% error for the quad screen I just feel like they are probably stressing you for no good reason. I have had two different co-workers test positive for being high risk on initial screens and end up having perfectly healthy babies.
Our Harmony test only took about 1 week (they said that the time can vary depending on how many are being run) so fingers crossed it comes back quicker than 2 weeks and you don't have to stress out for long. Hugs!

Tulips29 · October 2016

@yelllow22 sending you lots of prayers and hugs. I agree with above, PGS is more accurate and I really hope that this is just a mean scare that will not turn into anything more. I know the next 2 weeks will be super difficult for you, big hang in there. I think if there was a cause for concern, you would have known it from PGS testing first and foremost. Please remain positive and I have faith that everything will come back normal. We're here for you!

ultratomato · October 2016

@yellow22 I also heard of false positives I have a friend who sons came back positive and he came out just fine now Down syndrome. I hope everything works out for you.

mrygoround · October 2016

@yelllow22 I'm glad you were able to get the scan. I looked up false positives because 80% sounds bad, but I think it's how many actual trisomy cases it catches (20% are missed) and doesn't indicate rate of false positives. This has some info on the high false positive rate (96%!): "Only one or two out of 50 women with abnormally high readings eventually prove to have an affected fetus" (https://www.whattoexpect.com/pregnancy/pregnancy-health/prenatal-testing/triple-quad-screen.aspx)

cmm012 · October 2016

@yelllow22 I'm so sorry you got those results. I will definitely be praying for you and your baby. I'm going to believe that (s)he will be absolutely perfect.

yelllow22 · October 2016

@2legbaby I stayed up until 2 am last night doing research and I cannot agree with you more, they really stressed me out for no reason. I hope my results come back as fas t as yours did, thanks lot for your words!

@Tulips29 You are most likely right, it means a lot to hear positivity right now!

@ultratomato @mrygoround I also read about all the false positives, so that and the fact that my anatomy scan was perfect has given me more peace of mind. Thanks for being there for me!

Basically after processing all this I am really angry at the Dr. and I am definitely being emotional, but the way I see it is: the 1st Dr. said pgs is more important than other tests, he said to only do the anatomy scan, the 2nd Dr really doesn't even know what pgs is, she asked if they checked for a specific disease and I said no, that's pgd, with pgs they check for a normal number of chromosomes. When she offered the quad screen I politely declined and she kept pushing for it like 5 times, I mentioned that I would continue with the pregnancy regardless of the result but she kept going. I really feel like she was trying to upsell me!
After I gave in she did not mention the alarming false positive rates. All she said is that positive results would need to be confirmed with further testing. She did not explain how the results are given, or what they mean.
And when she called me she said that my results came back as "very high chance for ds". Again, it would have been nice to have some compassion and tell me not to worry too much because there's a lot of false positives. When I asked how accurate the test was her answer was "80%, so that means there's still a 20% chance that she'll be ok" Well first of all that's not encouraging but most importantly it is not accurate for the reasons @mrygoround explained. Also, I have now learned that the lack of markers in the anatomy scan changes the test results, which are given as a probability (mine was 1:29, and I found out in their website, not through my OB), so women can go from starting as 1:50 to 1:300 for example. I was told that she would contact me to officially go over the results, and after being in tears in their office I really expected a quick phone call yesterday but nope.

Thanks so much for putting up with my rant, I have a lot of faith that we'll be ok but I honestly feel very emotionally unstable. During IVF and the first 12 weeks I was fearful all the time, and I got to a point where that fear really went away and I was just happy... the fear is back and even though i'm really going to try to minimize it now I know i'll be so much more apprehensive about the rest of my pregnancy and delivery.
Again...You guys are amazing!

yelllow22 · October 2016

@chicandbubbly I thought about you yesterday when they looked at the cord, I am so happy that everything was good with your baby!!

mrygoround · October 2016

@yelllow22 You have a right to be angry with the 2nd Dr. and I would be concerned about further interactions and advice from her. Based on what she said I'd be a basket case just from the stress and after everything we've been through. However, even though she sounds kind of dumb about diagnostic testing, sometimes it's better to have an overly cautious doctor who will order tests (it would be better if they don't pressure or stress you out!). Now you know you can't count on her for reassurances.

But between the quad and the scan you know now that there's no risk for the other things the quad tests for (silver lining I hope) and I'm confident the harmony test will confirm all is well. I did AFP this past week (only part of the quad, but already had NIPT on top of PGS) and get results in 2 weeks and the anatomy scan is week 19. I know you said you wouldn't do anything regardless of the results, but I would (spina bifida, or other major development problems) and live in a state with laws that would prevent it after 20 weeks so this adds extra stress and is why I am reading everything I can about the tests.

vssbrm · October 2016

@chicandbubbly glad to read the good news!

@yellow22 thoughts are with you. I hope in the end your baby is healthy, w/ or w/o DS! We followed your first instinct and only did the testing that comes with PGS (since we did a study we also had the blood test after our +). My sister-in-law was told she had a high risk of DS but my nephew ended up not having it. Keep us updated, you've been thru so much already, you are strong enough to get thru this too! I'm glad you did your own research too, it all sounds so much less daunting!

yelllow22 · October 2016

@mrygoround Thanks for your support, I hope time goes by quickly until you get your results, and that they turn out perfect!

@vssbrm Thanks for the positive story, It helps to hear things like that!

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