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!

 

[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

 

[unnamed]

First 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.

 

[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

 

[_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

 

[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?

 

[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

 

[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.

 

[kosh]

sorry you're going through this
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

 

[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

 

[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.

 

[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.

 

[Desperado167]

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

 

[kosh]

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

 

[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.

 

[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…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!

 

[kosh]

great news!!!

 

[Desperado167]

That's brilliant,

 

[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.

 

[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!