Has anyone been told there's an increased risk of Down's but all was well? UPDATE in OP

amtay825 · May 2014

I intro'd a while back and have somewhat silent since then but lurk daily. I mainly post on the High Risk board.

I can't believe my dr did this, but on Monday I had a cerclage placed. Of course I'm nervous before the surgery and literally 5 mins before they take me back my MFM comes to talk to me and says, "By the way, we got your blood tests back and we'll need to discuss them in the office next week. They showed an increased risk for Down's but we'll discuss it next week when you come in for a followup." I'm like....WHAT? Seriously? Well what do you mean an increased risk...how much? He just said, lets get thru this cerclage and we'll discuss it next week in the office.

DH and I were so mad that he chose to do that right then. So I have no idea the numbers, no clue what to expect. I've called his office twice now trying to get in sooner than next Wednesday but looks like its not happening. Thanks for the week of stress you've just given me Doc! Geez!

So has anyone else been told they have an increased risk, but all was well? I'm only 33, and I know that your chances increase at 35. Any info would be GREATLY appreciated

UPDATE: I had my follow up appnt this morning from my cerclage. Good news is: Cerclage is holding great and cervix is long and closed. Bad news: I have a 1:8 chance for the baby having Downs syndrome. Now with that said, I asked the u/s tech to measure the neck and look at the nasal bone again; she said all looked beautiful and we don't have anything to be concerned about. I asked the doc about this and he said the same thing, but suggested we get the panorama test just to make sure. He said the 1st tri screening that I did can sometimes come back false positive, and its only 80% accurate. The panorama is 99% accurate. SO, now we wait 7-10 days for the results to come back...yay. At least at that time we will definitely know for sure the gender of the baby though; seeing as how we've been told it was both! I had two diff u/s techs last week and this week; last week she would bet money on a girl. This week she was very confident it was a boy. So we'll know for sure on that as well

jess123456 · May 2014

I don't have experience with this but wanted to send you hugs. Did you have a Harmony test or Verifi done or was this seen through the NT?

Thinking positive thoughts for you. I have heard of false positives before and hoping that is the case for you too.

amtay825 · May 2014

Thank you both! I had the NT scan, but baby was in a bad position and the tech was having a hard time getting a good look at it. Finally towards the end she said she got a good one, hopefully good enough for the Dr to look at. She said it looked great, Dr said it looked great as well. Then they drew my blood, but I didn't ask the name of the test so I don't really know. They just said it was for genetic testing. I almost declined, DH wishes we would have and told me then not to do it.

missnacholover · May 2014

amtay825 said:

Thank you both! I had the NT scan, but baby was in a bad position and the tech was having a hard time getting a good look at it. Finally towards the end she said she got a good one, hopefully good enough for the Dr to look at. She said it looked great, Dr said it looked great as well. Then they drew my blood, but I didn't ask the name of the test so I don't really know. They just said it was for genetic testing. I almost declined, DH wishes we would have and told me then not to do it.

The NT test really just gives you some odds. Basically it will tell you, "OK, of women your age who had the same measurements on the U/S and blood work, 1 in X had a child with Down's." So even if it tells you 1 in 8 or something, it definitely isn't a sure thing.

Hang in there!

CPM13 · May 2014

My sister-in-law was given a 1 in 6 chance of her baby having downs and she didn't end up having it. Your dr stinks for doing that to you. Hang in there.

Maelara · May 2014

I have no experience but wanted to send hug your way and I hope everything goes quickly!

ccam · May 2014

That was a really crappy way for your Dr to tell you that. But considering he was so nonchalant about it, it sounds like it's probably not much to worry about. The scan is only able to tell you odds, not give you a definitive answer. Good luck to you!

Kristy774 · May 2014

Drs really don't think sometimes. That's a terrible way to tell you. I've had 2 people I know that were told they were having a child with downs and both babies are fine!

Jpinky9 · May 2014

I don't have any experience either but I also wanted to send you a hug!! Definitely not cool of your dr to do that!!

MrsDL · May 2014

It's awful to have to play the waiting game and feel like your provider is dismissing something that is so huge to you. The NT includes a scan where they look at the baby, measure the fluid behind the neck and detect the nasal bone, but it's the blood work that goes with it that determines overall risk (PAPP-A and Free Beta hCG). Everyone has a risk for DS, trisomy 12, and 18 just based on how often it occurs statistically based on age. While a larger % of women over 35 have babies with DS, more babies overall with DS are born to women under 35 (because more women under 35 have babies). It's just a risk - the test takes your population risk based on age, then your specific results and adjusts it up or down. The adjustment might be very minor, showing you are at increased risk, but the risk can still be very minor.

For example, I'm AMA so my risk without testing for DS was 1 in 104, it was adjusted to 1 in 2061 after the scan and blood work. That said, just because I'm at decreased risk relative to age, doesn't mean I definitively won't have a baby with DS, just means it is less likely. I had maternity 21 so it is unlikely, but this is just an example. Your risk (making this up) may have been something like 1 in 650 at age 33, perhaps the NT measurement was fine and nasal bone was detected, but your PAPP-A was abnormal, maybe your risk now will be 1 in 200. So you're still at increased risk compared to the average incidence per your age group, but how large is the risk? Not huge - .5%. Mom's are going to worry about this stuff, but most of the time everything does turn out just fine. You might be at increased risk, but your risk might still be much lower than somebody else who is older and received "decreased risk" results. It's all relative. I hope this makes sense and eases your nerves a bit.

My neighbor had a 1 and 8 chance of trisomy 13 after testing. Now that's scary! I remember how upset she was. She did have an amnio and everything was fine, her daughter will be 2 in August. With my son, my blood was fine but the NT measurement was a little high, I was at "increased risk" for a "Major Congenital Heart Defect" - it ruined my pregnancy because I was so worried. My son was and is fine. Try not to worry, most of the time it works out that everything is fine, particularly if the ultrasound looked good.

staugustinewedding · May 2014

My sister was 35 when she had her last baby and they told her she had an increased risk for Down's bc her baby's "eyes were too far apart." Baby came out completely normal and is precious. Sorry you are having to go through this!

SarahHeck · May 2014

My sister's doctor found markers for downs and my niece doesn't have it either. Your risk must not be that great and with the ultrasound coming back good is a good sign too, because people with downs usually have different neck lines, my sister could never get a good ultrasound read to measure the neck so she stayed at higher risk and worried about downs her entire pregnancy.

MrsAdventure · May 2014

Haven't had to deal with your situation, but I wanted to send you ((hugs)), I am sorry you have to deal with the added stress

lincoln79 · May 2014

my co-worker was told his daughter had increased risk of Down's but she was born with no issues.

honestly, hearing his wife's perspective was a big reason we decided to forgo the genetic testing.

(((hugs)))

jlove253 · May 2014

As you can see from everything these women have said, you probably shouldn't be concerned. That being said, you can also now be prepared that your ob may not have the best bedside manner when you're in labor.

tylerkingrn · May 2014

I have two friends that blood work came back with increased risk and both had perfectly healthy babies. Hang in there as well as you can!!! Waiting and worrying is the worst!

KLKilgore · May 2014

That's the boat we are on. NT was 3.4 and blood work came back 1:21. We go to the doctor Monday to discuss if we want to do additional testing. I haven't made up my mind yet. 95% chance we have a healthy baby, that's what I am focusing on.

runningmama14 · May 2014

@MrsDL - Great explanation!

@amtay825 - So sorry your doc told you that way. How crappy. Hoping it really is nothing to worry about!

lisaren · May 2014

From a perspective of someone who just went through this...

I would do the testing again if I had to do it all over again. For many reasons but the top ones, to know. DS children are the most precious kids, but it does require a little adjustment. Trisomy 18 is not compatible with life so waiting could mean finding out at 20 w anatomy scan, then dealing with legal/government issues on termination. Some abnormalities are compatible with life but need extra monitoring during pregnancy. The harmony or other test are 99.9% correct. Little room for error. Knowledge is power.
Having a child with significant medical/special needs is hard. But life goes on. You will still love your child no matter, but I always feel it's better to know then to not.

Melissa2216 · May 2014

Wow, what shitty timing.

When I was 31, I had an increased risk of Trisomy 18 with DS and I had an amnio to get definite results. He was perfectly fine.

Now I'm 34 and my Panorama test came back high risk for DiGeorge Syndrome (it's a microdeletion that they've recently starting testing for). I had a CVS yesterday and I'm waiting on the results.

It's stressful as hell, I know, but even with an increased risk, your chances of baby having Downs is still very low.

Good luck! Update this post when you get more info from your doctor!

kaimee27 · May 2014

Some family friends were told that their oldest daughter would most likely have Down's based on their test results. She came out perfectly fine with no chromosomal abnormalities.

amtay825 · May 2014

Thanks everyone so much for sharing your experience, kind words and support. I will definitely update here when I see the dr next Wednesday. I think for now, I've just accepted the fact that yeah its a possibility, but so is so much other stuff that you just can't sit around worrying about. I've given it to God, and if its His will for me to have a DS baby, then so be it. I'll love this baby and care for this baby no matter what. Yes, I will most likely have additional testing done; unless the results are so close to being low risk that there's no point. I would like to be prepared. Thanks again everyone!

amtay825 · May 2014

Update in original post!

brooklyngirl18 · May 2014

i'm sorry you still have this stress hanging over your head, at least with the panaroma you'll get a clear answer. i'll keep my FX for you.

mander82 · May 2014

FX the panorama tests gives you nothing but good news!

Ineedmorecoffee · May 2014

Hoping and praying you get great news!!!!

SweetMelissa5 · May 2014

lisaren said:

From a perspective of someone who just went through this... I would do the testing again if I had to do it all over again. For many reasons but the top ones, to know. DS children are the most precious kids, but it does require a little adjustment. Trisomy 18 is not compatible with life so waiting could mean finding out at 20 w anatomy scan, then dealing with legal/government issues on termination. Some abnormalities are compatible with life but need extra monitoring during pregnancy. The harmony or other test are 99.9% correct. Little room for error. Knowledge is power. Having a child with significant medical/special needs is hard. But life goes on. You will still love your child no matter, but I always feel it's better to know then to not.

{Hugs} to Lisa, and I completely agree with this. OP, I really hope you get awesome results from the Panorama test, and I'm sorry for all the anxiety you're dealing with because of this.

mockingjay1 · May 2014

I'm sorry you are having to deal with this. FX you get good news and that you don't have to wait too long to get the test results back.

kristyru03 · May 2014

I'm going through the same thing right now. Our harmony test came back great but the test for Spina Bifida came back with elevated levels. Had to go redo my blood work this morning. They are thinking it might have been a false positive so now we play the waiting game. Sending good thoughts your way. I know it's nerve racking!!

dr_pr · May 2014

I'm glad they're doing the Panorama--it'll be good to know for sure. Even if they couldn't, there is a 7:8 chance that your baby wouldn't have Trisomy 21, so while you wait, look at it that way!

MrsG1019 · May 2014

Sorry to hear of everything you had to go through. Can you give me more info on yor cerclage? What was your cervix length when they did it? Mine is down to 2.9 from 3.3 and the doctor mentioned that as a possibility if it gets much shorter and just not sure as to what to expect with the procedure. thanks!

emoxymoose · May 2014

Hope you get the results back soon!

amtay825 · May 2014

MrsG1019 said:

Sorry to hear of everything you had to go through. Can you give me more info on yor cerclage? What was your cervix length when they did it? Mine is down to 2.9 from 3.3 and the doctor mentioned that as a possibility if it gets much shorter and just not sure as to what to expect with the procedure. thanks!

We did the cerclage as a preventative, not emergency because of my history of losses and then with my DS we waited too late and it didn't hold so I was on complete bedrest for 6 months. The Monday before my cerclage, my cervix measured 5cm. The following Monday when he did the procedure; it was 1.7cm. He said you have to have 1.6cm to do the procedure, so we got it done literally in the nick of time. Of course, every situation and every dr is different. How far along are you? Have you had a cerclage previously? Are you on any restrictions right now?

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Has anyone been told there's an increased risk of Down's but all was well? UPDATE in OP

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