Positive for downs blood test.... Freaking out

agt104 · December 2016

Hello,

Stm here. I'm 29 and my 14 week test came back as an elevated risk (1:80). Obgyn bumped me up to Perinatology in two days! I'm terrified. Any one deal/dealing with this?
Thanks!

pshaortao · December 2016

No experience here, are they taking steps for further testing? Just remember, it's still 79 out of 80 it's nothing so your odds are still good

agt104 · December 2016

@pshaortao yes we are doing further testing, I believe an early Anatomy scan? Not sure it's happening so fast with a lot of info...

pshaortao · December 2016

I did a quick research and it looks like it's normal to do a level two ultrasound and you could also do an amnio. I imagine it's all very overwhelming. Hang in there!

BeachMommy2B · December 2016

No experience, but sending positive thoughts your way!

nda_roxybabe · December 2016

Thinking positive thoughts!

chickyclg · December 2016

Positive thoughts to you, we are in a different situation where we are a very high Spina Bifida risk (I have MTHFR and DS has a mild form of SB and my niece had a fatal form). We here having additional blood work Friday, an anatomy scan at 18 weeks, and depending on the outcome we will opt for an amnio.

I know there is still a possibility that we won't know one way or another until after birth with additional testing.

KMD1106 · December 2016

Sending positive vibes to you and @chickyclg

achays11 · December 2016

Sending you positive thoughts!

mamatowildones · December 2016

Thoughts and prayers

PghMom412 · December 2016

Our NT blood work came back with increased risk (1:20) now we are waiting on NIPT results. Depending on those results we have the option for additional u/s or amnio.

Fingers crossed you get some answers or guidance at your appointment. and like @pshaortao said there's still 79 out of 80 it's nothing.

Kipperoo · December 2016

Sending positive vibes to those of you waiting for the next step in test results. Try to stay positive and remember that nothing you did could have changed where you are. I know it's easier said than done...we had some similar concerning results during my first pregnancy--it all turned out fine, but I remember being very stressed for a while and feeling helpless.

Yiggle09 · December 2016

Were not in the down syndrome risk but we are in a different risk of undersized and underweight at birth. Having extra blood work and a ultrasound at a hospital maternal fetal medicine group instead of normal office ultrasound and then ultrasounds every four weeks following the pregnancy.

clebl24 · December 2016

No experience here, but sending positive thoughts during this time of uncertainty.

vrj0522 · December 2016

T&Ps to you and everyone who is getting further testing! I'm sorry you all have to stress out and hoping for good results for everyone!!

CarmCeG · December 2016

No experience, but as @pshaortao said the additional testing seems to be the next step, keep your head up.

Sending positive vibes your way!

kat81 · December 2016

I'm sorry to see this and I can see why you're freaking out but I want to reiterate that this risk elevation is still to just 1 in 80. Even though that is more than what is found in the population, it is still exceedingly low. There is still a 98.75% chance your baby will not have Downs.

JessErinF · December 2016

@agt104 hey there, lurker here form june 2017 (i will probably end up with a may baby) and we are dealing with EXACTLY the same thing. got the results Monday 1:74. Also at risk for small baby at birth. Doc immediately called me in for the NIPT test and we saw the perinatologist the next day (already had it scheduled, lucky me!) so now just waiting for the NIPT to come back. sooo stressful. :-/ But I would ask your doc about NIPT (should be covered by ins now because of your quad test results) because its just another blood test but is 99% accurate (way better than an early anatomy scan although who doesnt want more scans right?) rather than an invasive amnio....

Jens_Hoes · December 2016

I have nothing useful to add other than I'm thinking of you all who have elevated risks.

RainyDays86 · December 2016

Also sending good vibes to all of you with elevated risks. I can't imagine the stress of waiting to find out.

LeilaD123 · December 2016

No advise but sending positive thoughts your way ladies.

pshaortao · December 2016

I hope your appointment goes well today!

agt104 · December 2016

Thank you! Everyone is helpful but one hour before my apt I'm in full panic mode!

KMD1106 · December 2016

Thinking of you @agt104!

agt104 · December 2016

Update: detailed ultrasound looked great! Reducing my risk to 1:160 above the high risk line. But for peace of mind I opted for amino testing as well. Feeling positive. Thanked for the support! Also found out its another boy!!!!

pshaortao · December 2016

I'm glad your number improved! And congrats on having another boy

rkstro2 · December 2016

@agt104 glad your numbers improved, US looked good, and you're feeling positive!

hp_momma · December 2016

@agt104 Glad to hear that your numbers improved!

We just received a call tonight that our numbers came back elevated for Down Syndome as well. My husband is freaking out, I'm trying not to at this point. I have to call MFM tomorrow to schedule an appointment. I'm super worried that I won't be able to get in to see a doctor before our vacation (I leave Wednesday and will be gone for three weeks). So the possibility of having to wait almost a month with no answers is stressing me out.

chickyclg · December 2016

@h&pmomma positive thoughts to you too, hopefully they can get you in ASAP.

achays11 · December 2016

@agt104 I'm glad for the positive appointment! Praying the amnio goes just as well.

@h&pmomma praying you can get in before you vacation. Positive thoughts to you and your husband.

PghMom412 · December 2016

@agt104 so glad to hear the appointment brought you some much needed relief!

Kipperoo · December 2016

h&pmomma, Ugh, I'm sorry. Hopefully they can get you in before your vacation.

@agt104 , so glad to hear your appointment went well!

vrj0522 · December 2016

Yay for lower risk results!

hp_momma · December 2016

Spoke to the doctor at the MFM via phone today because I was told I wouldn't be able to be added to the schedule for two weeks (that's obviously a problem). He went over the options with me on next steps, they like to do an ultrasound to check for any markers first and then he started discussing an amnio. I told him that an amnio would be last on my list of procedures I wanted to do. He said additional blood work could be done that doesn't guarantee answers and he didn't seem like he liked that option. I'm assuming he is talking about the tests similar to Harmony, Materni21, etc. I'm seen at a military hospital and those tests are not covered unless your older or high risk so that wasn't an option for us in the beginning. But now that I have an increased risk I feel like that seems like the next reasonable answer.
After much crying over the phone (I tried my hardest to hold it back) he agreed to squeeze me in 1 day before my vacation for a consult but NOT an ultrasound because he just doesn't have the time. I'm hoping that I can discuss more with them about further blood work being done at least before I leave so that we can get some answers while we are gone.

I'm sorry for the novel but I need to get it all out and tell someone. I don't want to worry my mom before our consult and my husband is more of the "don't talk about it until he has more answers". He's trying his best to deal with my emotional mess. We've never done genetic screenings with either of our previous two pregnancies and now I'm at the point I wish we hadn't done it again because it's so stressful.

PghMom412 · December 2016

@h&pmomma so glad they can at least see you before your trip (and fingers crossed an u/s appt opens up).

We moved onto the blood work as the next step as, like you, amnio is my last resort. The MFM Dr said the blood work is more accurate in confirming no, but even if it gives a yes it is more detailed in why your odds are higher than just the NT u/s and blood work can be.

Jens_Hoes · December 2016

@h&pmomma I'm glad they can get you in to talk at least. I know it will be hard to not let it affect your vacation, but know that nothing you do now will change what is going on.

hp_momma · December 2016

PghMom412 said:

@h&pmomma so glad they can at least see you before your trip (and fingers crossed an u/s appt opens up).

We moved onto the blood work as the next step as, like you, amnio is my last resort. The MFM Dr said the blood work is more accurate in confirming no, but even if it gives a yes it is more detailed in why your odds are higher than just the NT u/s and blood work can be.

We didn't have an NT scan (also not covered by the military) but just the two part blood screen, I think it's the quad screen? From what I've researched (I'm trying not to google but it's nearly impossible) the quad screen has a lot of false positives, which I wish our OB would have explained to us before we consented to the initial blood work as we probably would have opted out again. I'm hoping the more advanced blood screens can give a more accurate answer for us.

@Jen_Shoes Thank you! That is exactly the mind set I'm trying to get myself in as nothing will change for us no matter the outcome and there is nothing I can do to change it at this point.

PghMom412 · December 2016

@H&pmomma that's what was elevated with my results as well...which is making me frustrated. my NT ultrasound was fine and even showed a nasal bone (which is commonly not present with DS dx) but my HCG came back high so my risk skyrocketed. We didn't do the testing with DD since it wasn't insurance covered and was presented as optional, but this time it seemed more routine to have it done at the office. I'm willing to bet my HCG was high with her as well since the MS has been horrible with both pregnancies. If I had a time machine I would skip the testing all together.

It is nice to have the board though and see other mamas who are in the same boat.

hp_momma · December 2016

Yes, the OB made it seem so much more routine this time and like we were crazy to not do it. They also told me on the phone today that if your dates are even slightly off it can screw the results. Which seems crazy to me. At our dating ultrasound I measured 4 days behind which wasn't enough to change my EDD but now makes me question if I got the second blood draw too early and it's messing with my results. I got it at exactly my 16wk mark which was the earliest I could do the draw but my OB assured me it was fine to get it that day.

I agree it is comforting to have other people to discuss it with and await the results! Do you know when you'll get your second results?

nda_roxybabe · December 2016

Which test are you guys referring to? Not the NT Screen with the blood test?

hp_momma · December 2016

@nda_roxybabe I did not have the NT screen. I had the quad screen. One blood draw at 13 wks and one between 16-18wks.

Want a personalized experience?

Positive for downs blood test.... Freaking out

Re: Positive for downs blood test.... Freaking out

Choose Another Board

Search Boards