# 36yrs, going on for amnio due to high risk



## bbforme

Hello, ladies:

I've come to you all looking for a little support. 

I am a 36yrs old (will be 37 when bb is born). I am 15wks pregnant with my 2nd child. This is my 3rd pregnancy. I had a m/c in early this year, didn't even make it to 5wks with the pregnancy. 

As the title of my post indicates, I am scheduled for an amnio next Tuesday, 07 June. DH and I are really stressing out about it. I got the call early last week that my blood tests/NT scan put at high risk for downs at 1:42. 

From what I've read on the internet, it doesn't seem like my blood test numbers that THAT off, but then again, what do I know. I'm trying to remain positive - reassuring myself that everything will be okay. I just don't know how to cope otherwise. 

What I struggle with the most are the risks of the procedure. I'm sure that's what all women who go through this stuggle with. I've read the chances of m/c are 1 in 100 to 1 in 1400. It's just so confusing! I also read on another forum that the FISH results aren't 100%, which is upsetting to hear as well. 

SO MUCH CONFLICTING INFORMATION! It's driving me nuts!

Please, share your experiances with me. Share your knowledge, reassurance and prayers. I honestly just need all the positive vibes I can get during this wait!


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## truly_blessed

Didn't want to read and run hun but I'm seriously considering not having the tests as there's no way I would be able to have the amnio and the tests cause so much worry and i have heard aren't that accurate in many cases. Hope it all goes well x


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## unnamed

First:hugs: This is a very difficult decision and you need support from your family to make it.

I didn't have the test in my last pregnancy as I knew I would not abort but am not sure how my family would cope with a baby with severe special needs now ( I am a teacher and have taught many children with mild to severe special needs so I have an idea of the extra difficulties along with the wonderful times that can happen for these children and their families) . My main worry is that once we were gone my son would have to look after his sibling for the rest of his life, is that fair? However I still could not terminate or put my child up for adoption so I am not going to have the test this time either- what will be will be. If there was no risk I would have the test so we could prepare. 

You have to think about what _you_ will do with the results- would you/ your family be able to cope with a child with severe special needs? Would you be able to terminate or put your child up for adoption? Would you worry maybe without cause for your entire pregnancy without knowing for sure?

Talk to your family and good Luck with whatever decision you make.


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## cakey

Hello there bbforme  I had an amnio when i was about 34 as my risk was high + i havd already had one child with Downs syndrome+heart trouble.I also had a history of mc so i was absolutely terrified about the procedure itself+I went round and round in circles in my head as to whether i was doing the right thing or not.Anyways i had the amnio and it was not nearly as bad as i imagined in my head+i only felt a little achey for a few hours after but i and my lovely baby were fine. 
Not sure if i have helped or not but my heart goes out to you hunnie-only you (+help and support from your loved ones)can decide what is best for you. 
Sending you lots of ((((hugs)))). Lorraine.Xx


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## _Vicky_

awwwww sweetie bit hugs - no experience but I would have had further tests had I needed to. I know lots of people that have had an amnio and its been fine - I am sure you need to rest rest rest after - so check on that I suspect it may be up to 48 hours after?

Good luck xxxxxxxxx


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## strugglingmom

I am 37 and pregnant with my first. I had a m/c late last year but this time I am at 19 weeks. We are very excited but this whole process has been more than an emotional rollercoaster for me. I did my first trimester screening where my results for risks of down syndrome came back at 1:1700 at that time they were talking to us about doing an amnio. My husband and I felt pretty good about passing based on our results. I then did my second trimester screening where my results came back for risks of down syndrome at 1:250. At this point we decided to go ahead with the amnio. I had it done last week. We received the preliminary results back on Tuesday that everything came back good for chromosome 13, 18 and 21 (the down syndrome chromo). So I finally felt relief that I could be excited about our little boy. Today I received a call from my doctor's office asking me to do a chromosomal blood test based on the formal results of the amnio. When I asked why, the tech on the other end couldn't give me an answer. So now I'm left with worry over the weekend to know what could be wrong. I can't find anything on the internet to explain why I would need additional blood testing. Like I said this has been much of a rollercoaster ride for me. Anyone out there who has been in my position and can offer any insight?


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## Storm1jet2

Hi - its a decision you and your DH need to make. I'm still undecided as to whether to have the blood tests or not, I personally wouldn't be having the amnio as to me this baby will be coming regardless. Try to think of it this way 1:42 seems high but really it's not, if you tossed a coin 42 times 41 times you would get heads and only once you would get tails - thats 41 chances of all being ok. I hope you and your DH make some decisions and if you do go for the amnio do take care of yourself and rest afterwards and I sincerely hope the results put your mind at rest :hugs:


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## Trying4ababy

I'm 29 but my husband is 50 and my blood results came back 1:170. I had the amino and everything was found to be okay. My brother actually is the one who made me feel a bit better.

In your case lets say you had 41 red marbles in a bag and 1 black one. What are the chances you'd reach in and pull out the black one? 
It sounded silly at first but it made me realize that that my chances seemed low when I viewed it that way.


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## kosh

sorry you're going through this :hugs:
I'm also struggling but for different reasons

I am not familiar with the actual risk values for NT and bloods, but I know that when calculating the overall risk they also take into account your age. My MW said that my blood/NT results will have a high chance of coming back as high risk just due to my age (I'm 40). You are younger, but still your age might have tipped the risk value.
Based on this we've made a decision that will sound strange to most of you, but we feel it's what is best for us: I'll have the diagnostic test (CVS) regardless of the NT/bloods. I know I could not cope with not knowing, or going through my pregnancy with a 'risk value' and not a definite yes or no answer. But that's 100% personal and I know I am almost the only one who thinks/feels this way...

Only you know what's best for you. As someone else said you need to think about what you will do the results, and whether they might bring some type of relief or make the situation more difficult. 

Re. the procedure - everywhere I read, I found that the risk is around 0.5-1.5%. I wish it was 1:1400! In any case, I try to think that the chance of MC is still rather low. The problem with stats, is that they very much depend on how you phrase it or look at it. If you think about it, you can also think that the procedure is ~99% safe! 
Three friends of mine had it done, and they say that it was deff not as bad as they'd imagined. They just had to rest for a couple of days afterwards. 

Re. the analysis - FISH is an initial analysis that can be done quickly. By FISH they only look at some of the most important pairs of chromosomes: 13, 18 and 21. If those results come back ok, then Down and Edwards syndrome (and another one I can't remember) can be ruled out. But they still have another 20 pairs of chromosomes to look at. They do that buy a more detailed analysis called karyotyping. I believe the accuracy of this is 99.5-100%. 

sorry for the longish post, I hope it helps somehow.

Good luck :hugs::hugs:


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## mafiamom

i had an amnio at 18 weeks due to 1:3 chance of trisomy 18. i am 40 years old. 

first off my results came back absolutely perfect and i will NEVER get those tests again. soooo many people end up with more invasive procedures due to these blood tests. i think they need to perfect the tests a bit before suggesting them. not sure they are quite ready yet.

secondly - the amnio wasnt bad. i did a lot of research and i found that now that they are doing them with an u/s the m/c rate is like 1/1600.. hard to believe they actually did amnio's blind, isnt it?? the last risk studies were performed in the 1970's and most docs are still going by those stats.

here is a link i found.

https://www.parents.com/pregnancy/stages/amniocentesis/risk-of-miscarriage-from-amnio-low/

GL and keep us posted on how everything goes... honestly - the waiting is the absolute worst part :(


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## bbforme

*truly blessed* - Thank you for the well wishes. I very much appreciate your post! 

*unnamed* - My DH and I both agree, our main worry if we were to have a special needs childs is how would we cope/plan for that childs future after we're gone. I would not want to burden our daughter with such a responsiblity - she has her own life to lead. And the thought of putting our child (adult) in a home just breaks my heart into a million pieces. In the same breath, I could never terminate or put my child up for adoption. NOT options I could live with. With all that said - the reasons FOR the amnio would be peace of mind/preparation. My husband is stressing more about this than I am (he's a worrier) and I feel the need to do this just for his sake alone. The fear is still there though...Just wishing it could be next week already and we have the news everything is okay...That's all I want. 

*vicky *- Thanks for the words of encouragement. Honestly, in my heart of hearts, I feel this baby is 100% healthy! I really, really do. I can't think otherwise. I know that most women come out of this experiance with positive results. I just hope I am one of those women as well. 

stugglingmom - Your post really hits a nerve with me! I can't imagine what you must be going through right now. An emotional rollercoster is an understantment, I'm sure. I wish I could offer your some advice, but all I can say is that I hope you get answers soon! Hopefully someone will respond with some insight. Honestly, I'm not even sure what the doctor is asking from you? A chromosomal blood test based on the amnio. Is that not what the amnio is? Call your doctor - demand answers! My prayers are with you! 

*Storm* - Thank you for your post! Your kind words are very comforting. 

*Trying4baby* - Yes, that's just the way I'm trying to look at it! THANK YOU for sharing your experiance! I hope mine goes just as well.

*Kosh* - Your post is very helpful! I appreciate you taking your time to lay it all out like that! I agree, the NOT knowing for some is extermely stressful. My husband fits into that catergory. Of couse, I too would like to know - but I feel in my heart all is okay so I'm resting in my faith that all is good. Just doesn't take away the scared feelings though. I actually will be more scared in the waiting period than anything...I am going to ask about the FISH results tomorrow. THANK YOU for posting! 

*mafiamom* - Thank you for posting. I agree with your post 100%

QUOTE: "many people end up with more invasive procedures due to these blood tests. i think they need to perfect the tests a bit before suggesting them. not sure they are quite ready yet."

I keep telling DH that I wish I never had the test! It's far too much stress! I won't be having the NT SCAN if I ever become preggers again. THank you dear, for your post! 

_*_*_*_*

Tomorrow is the big day. I feel like this day is just dragging on....I'm not sure how many days to take off work. I don't want to be at work when the results come in.

QUESTION: Did you get your results over the phone?

I had the results of my NT Scan over the phone at work and spent most of the morning crying in my boss' office - DO NOT WANT TO GET ANY NEWS HERE AT WORK! 

Ugh...the wait.


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## unnamed

I will keep you in my thoughts tomorrow and hope you don't have to wait too long for the results please let us know how everything goes. :hugs::hugs::hugs:


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## Desperado167

Hi Hun like unnamed,I am also thinking of you,good luck Hun,xxxx


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## kosh

in my thoughts too, take as long as you need to recover :hugs:
please let us know


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## ciarhwyfar

I am glad you feel you made an informed decision and I hope everything went well. My cousin had her two at 36 and 39. She had an amnio both times. My last two were/are at 39 and 42 and I didn't. Her two and my last one are all just fine. This one doesn't appear to have any reason to worry about abnormalities either.


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## bbforme

Thank you KOSH for your IM and THANK YOU ALL SO MUCH FOR CONCERN AND SUPPORT! 

*NOW TO THE UPDATE.....*

Everything went very well Tuesday! 

Upon arriving at my appointment, I met with 2-genetic consolers (one being a student who was shadowing). They basically explained to me everything I already knew (thanks to this forum!) about what an amniocentesis is and why I was recommend by my midwife in the first place. What I suspected all along was confirmed&#8230;my blood test were indeed within a &#8220;normal&#8221; range, and that it was my NT Scan that was at the higher end of &#8220;normal&#8221;, albeit, the higher end of normal at 95 percentile. HOWEVER, 2.9mm is still normal. Since my age already puts me at a higher risk, coupled with the NT Scan, that&#8217;s why I was being offered an amnio and an option to confirm. 

However, first thing first, I was to have a level II ultrasound. I was told by doc that ALL women over 35 should have a level II, just to make sure all is progressing normally. The level II would also determine if there are any &#8220;soft markers&#8221; for Down&#8217;s. After the ultrasound, I can then decide if I&#8217;d like to proceed with the amnio. (They did state as a warning, that soft markers are only found on 50% of confirmed DS fetuses.) 

Our ultrasound showed a very active, perfectly healthy looking baby BOY! Everything about baby was spot on! My risk level was raised from 1:42 to 1: 84. So DH and I decided that since everything &#8220;technically&#8221; is within normal ranges and our baby appears to be very normal and healthy, to hold off on the amnio. 

We are going back in 3-weeks for another level II ultrasound, just to look again and confirm all is going well (I can still have the amnio at that time should I choose), but all in all, with both agree that with our doctor giving us at 97% chance all is good &#8211; we don&#8217;t need to proceed with an amnio at the time. 

We both feel at peace our decision to hold off and can sleep at night with the information we have now. 

*I felt armed with information upon my appointment and would have felt otherwise without this forum and all the advice from all the lovely members! *


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## kosh

great news!!! :thumbup:


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## Desperado167

That's brilliant,:hugs::hugs::hugs:


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## truly_blessed

that's great news. thanks for all the info on the level II ultrasound. I had never heard of this so it's good to know there are other things that can be considered before the amnio.


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## bbforme

Thank YOU, ladies! 

Truly_Blessed - Level II ultrasounds are AWESOME! They last about 45mins and check the baby from head to toe. In a level II u/s they look at the heart (all four chambers), the kidneys, the bladder, the skull/face, and take all measurements! Doc even looked at baby's fingers and toes! It was pretty neat! During the u/s the doc even switched to 3D mode so we could see baby!


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## truly_blessed

was that NHS as well hun, not sure where you are. The midwife talked about DS screening yesterday and I had decided I didn't want any tests but DF wants to have them. His says ultimately it's my choice but he doesn't know how we would cope so it was a bit stressful last night.

Now I know about this extra ultrasound, I think I will do the same as you have done and then at least I know the amnio is really necessary. I did ask the MW about 3d scans and such and she said even they don't give any more indications of DS. Obviously she isn't up to date on the latest technology it seems. Thanks from the bottom of my heart, it really helps what is a very difficult decision to make. x


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## TiggerToo

mafiamom said:


> i had an amnio at 18 weeks due to 1:3 chance of trisomy 18. i am 40 years old.
> 
> first off my results came back absolutely perfect and i will NEVER get those tests again. soooo many people end up with more invasive procedures due to these blood tests. i think they need to perfect the tests a bit before suggesting them. not sure they are quite ready yet.
> 
> secondly - the amnio wasnt bad. i did a lot of research and i found that now that they are doing them with an u/s the m/c rate is like 1/1600.. hard to believe they actually did amnio's blind, isnt it?? the last risk studies were performed in the 1970's and most docs are still going by those stats.
> 
> here is a link i found.
> 
> https://www.parents.com/pregnancy/stages/amniocentesis/risk-of-miscarriage-from-amnio-low/
> 
> GL and keep us posted on how everything goes... honestly - the waiting is the absolute worst part :(

About those Down stats - you're right. And they're also based on a LOWER proportion of +35 year old women who had babies back then, as opposed to now. So the numbers were skewed population-wise.

The number of Down children born to mothers UNDER the age of 30 is actually HIGHER - because they have more babies to start with.

The so-called science of stats is more like - let's plug in a "statistical test", and if that one doesn't give us the answer we're looking for, we'll pick another and then another and just see what one gives us the desired result. Then we'll write our paper based on that answer. 

I threw most stats out the window after taking a grad-level stats course. It convinced me that even the purest of numbers is biased, skewed, and partially contrived. I know we have to have some sort of basis for looking at the world, but I take them with a grain of salt. Especially Down babies - how many do you actually see out in public with their older parents? In ten years I can remember two. One was a baby and the other was a toddler. I see far more healthy babies (at least based on appearances). I'm more interested in what actual labs say and in real life experiences and not so-called scientists.

Risks are real, but our perception of those risks just may be skewed by lousy and practically antiquated mathematics.

Sort of an interloper - I'm only TTC #1, but given my age (few days shy of 38!) I do spy over here on occasion just to see what the latest and greatest is for this sort of thing. I consider what happens on this forum as more indicative of the REAL world for us +35s over a bunch of numbers in a journal. Oh, and when it's me on here, I'll be biting my nails just like the rest of you, because knowing a lot of details is MEANINGLESS when it's you in the MD's office, and as an RN I completely realize that. I'm not as blase as I might sound. I just try very hard to be realistic and remain as sane as possible (and I know when you're pregnant it goes right out the window, and that's okay and I'm ready for that - especially given how hard most of us at this age work to get to that point).

Also remember that sometimes docs call for extra tests because in this litigious age they feel they need to cover their butts from all angles.

Good luck to all of you - all of your pregnancies give me hope and keep me positive, and I rejoice, hope and FX with and for all of you! I only hope I'm welcome here.


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## bbforme

truly_blessed said:


> was that NHS as well hun, not sure where you are. The midwife talked about DS screening yesterday and I had decided I didn't want any tests but DF wants to have them. His says ultimately it's my choice but he doesn't know how we would cope so it was a bit stressful last night.
> 
> Now I know about this extra ultrasound, I think I will do the same as you have done and then at least I know the amnio is really necessary. I did ask the MW about 3d scans and such and she said even they don't give any more indications of DS. Obviously she isn't up to date on the latest technology it seems. Thanks from the bottom of my heart, it really helps what is a very difficult decision to make. x

Level II ultrasound is sensitive and detailed than your general u/s. It costs a pretty penny as well - alot more expensive than the amnio procedure, but worth our peace of mind. The 3D scan was just an added bonus for fun from our doc, but not apart of the evaluation of baby. 

I hope that helps!


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## Jellybean0k

With my first, I was told that my bloods showed signs of downs, and were going to schedule me for an amnio, but I told them no, and she was born perfectly normal


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## TiggerToo

bbforme said:


> thank you kosh for your im and thank you all so much for concern and support!
> 
> *now to the update.....*
> 
> everything went very well tuesday!
> 
> Upon arriving at my appointment, i met with 2-genetic consolers (one being a student who was shadowing). They basically explained to me everything i already knew (thanks to this forum!) about what an amniocentesis is and why i was recommend by my midwife in the first place. What i suspected all along was confirmedmy blood test were indeed within a normal range, and that it was my nt scan that was at the higher end of normal, albeit, the higher end of normal at 95 percentile. However, 2.9mm is still normal. Since my age already puts me at a higher risk, coupled with the nt scan, thats why i was being offered an amnio and an option to confirm.
> 
> However, first thing first, i was to have a level ii ultrasound. I was told by doc that all women over 35 should have a level ii, just to make sure all is progressing normally. The level ii would also determine if there are any soft markers for downs. After the ultrasound, i can then decide if id like to proceed with the amnio. (they did state as a warning, that soft markers are only found on 50% of confirmed ds fetuses.)
> 
> our ultrasound showed a very active, perfectly healthy looking baby boy! Everything about baby was spot on! My risk level was raised from 1:42 to 1: 84. So dh and i decided that since everything technically is within normal ranges and our baby appears to be very normal and healthy, to hold off on the amnio.
> 
> We are going back in 3-weeks for another level ii ultrasound, just to look again and confirm all is going well (i can still have the amnio at that time should i choose), but all in all, with both agree that with our doctor giving us at 97% chance all is good  we dont need to proceed with an amnio at the time.
> 
> We both feel at peace our decision to hold off and can sleep at night with the information we have now.
> 
> *i felt armed with information upon my appointment and would have felt otherwise without this forum and all the advice from all the lovely members! *

yaaaaayyyyyy!!!!


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## TiggerToo

bbforme said:


> Thank you KOSH for your IM and THANK YOU ALL SO MUCH FOR CONCERN AND SUPPORT!
> 
> *NOW TO THE UPDATE.....*
> 
> Everything went very well Tuesday!
> 
> Upon arriving at my appointment, I met with 2-genetic consolers (one being a student who was shadowing). They basically explained to me everything I already knew (thanks to this forum!) about what an amniocentesis is and why I was recommend by my midwife in the first place. What I suspected all along was confirmedmy blood test were indeed within a normal range, and that it was my NT Scan that was at the higher end of normal, albeit, the higher end of normal at 95 percentile. HOWEVER, 2.9mm is still normal. Since my age already puts me at a higher risk, coupled with the NT Scan, thats why I was being offered an amnio and an option to confirm.
> 
> However, first thing first, I was to have a level II ultrasound. I was told by doc that ALL women over 35 should have a level II, just to make sure all is progressing normally. The level II would also determine if there are any soft markers for Downs. After the ultrasound, I can then decide if Id like to proceed with the amnio. (They did state as a warning, that soft markers are only found on 50% of confirmed DS fetuses.)
> 
> Our ultrasound showed a very active, perfectly healthy looking baby BOY! Everything about baby was spot on! My risk level was raised from 1:42 to 1: 84. So DH and I decided that since everything technically is within normal ranges and our baby appears to be very normal and healthy, to hold off on the amnio.
> 
> We are going back in 3-weeks for another level II ultrasound, just to look again and confirm all is going well (I can still have the amnio at that time should I choose), but all in all, with both agree that with our doctor giving us at 97% chance all is good  we dont need to proceed with an amnio at the time.
> 
> We both feel at peace our decision to hold off and can sleep at night with the information we have now.
> 
> *I felt armed with information upon my appointment and would have felt otherwise without this forum and all the advice from all the lovely members! *

.....and as usual most of the information you were given AT your appointment would've been handy information to have BEFORE the appointment....why do they ALWAYS do that? I spend most of my time on the other side of the treatment table and it INFURIATES me (especially when, in my area of expertise, I know there's more to whatever the patient is being told and I legally can't say anything).

At any rate, I'M SO GLAD FOR YOUR NEWS!!!


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## bbforme

*UPDATE:*

We have another level II scheduled on 28 June to make sure all is still looking good. 

I'll be sure to keep you gals posted!


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## mafiamom

great news!!!


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## miel

With Trystan i had two soft marker for down ...a stain in the heart and a bubble in the brain ....( but my blood test were very good ) however we had to have a other scan after a week to confirm the soft markers and they were there still i will do the amio....anyway with in a week his body had reabsorb the stain and the bubble ! so dont stress about the scan they cant give yu "false " alarm as well...

for this pregnancy our little boy also have a stain on the heart ( i think is a calcium deposit ) one more time my blood test was excellent so even not doing the scan ...as i found it may be even just a genetic marker and only that about the stain...

Here now in usa they are trying to change the protocol as they really believe those markers are something to worry about if you have more then 3 and even it doesnt mean anything !
good luck sweetie ...:)


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## knitbit

Make sure to get the second trimester blood draw. My risk went from 1/81 to 1/4700 based on the second trimester blood results. I think they give fairly pessimistic results during the first trimester, mostly due to age, and then adjust it with the final blood. 

Good luck!


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## bbforme

knitbit said:


> Make sure to get the second trimester blood draw. My risk went from 1/81 to 1/4700 based on the second trimester blood results. I think they give fairly pessimistic results during the first trimester, mostly due to age, and then adjust it with the final blood.
> 
> Good luck!

I never heard of a 2nd trimester screen?! Wonder why my MW hadn't mentioned it. Okay...well, maybe I do know....I told her I didn't want anymore "screening". 

I'll ask at my next appointment! Thanks for the info!


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## knitbit

Yeah, it's part of the "sequential screen" where they combine the first trimester NT ultrasound and blood serum with the second trimester blood. You really want to draw the second trimester blood between 16-20 weeks (according to my paperwork). It's realatively new and the combined screening is supposed to be better than just using the first trimester screen alone. Since you already have a first trimester result, you might as well get the full picture. I had already decided not to do amnio so the reduction in risk was very welcome.


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## cayjay

Some more info about the NT screening - my OB was trained by the actual doctor who invented the NT screening. I can't remember his name now but my doc said even the actual inventor only gets it right 90% of the time. Not good enough odds for me! If you want to know for definite, have the amnio, not the NT screening. I'm having mine next week. Good luck everyone!


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