UPDATE in original post: n/t scan results - don't know what to do

JoAnna914

So I just got my N/T scan results, and I'm not really sure what to do with these numbers.  I am scheduled for an amnio in three weeks, which I am really nervous about due to the miscarriage risk.  But I also am one of those people who don't do well with ambiguity and uncertainty - I would rather have a diagnostic test done and know what I'm dealing with.  Here are my numbers:

Downs: Age-related risk - 1/132, Post bloodwork risk - 1/650

Trisomy 13 and 18: Age-related risk - 1/240, Post bloodwork risk - 1/4781

I am less concerned about the Trisomy numbers, but while my risk went way down for Downs, that number still scares me.  DH refuses to tell me what he wants - he wants whatever I want. 

The nurse practitioner I discussed my numbers with was incredibly optimistic about the numbers, assuring me that this was a great result but acknowledging that I could still be the 1 out of 650.  She also gave me all of the statistical data about my doctor and his amio experience - he does 100 per year, and he did hers for her 17 year old son, too - and he clearly knows what he's doing.  What I love about the professionals in my practice is that they give you all of the information you ask for, make no judgments, and don't try to push you into anything.  But sometimes, I wish someone would say, "Those numbers could be better - you may want to consider amnio."  But I am scared to do the amnio as much as I'm scared to not know with certainty what I'm dealing with for my child.

I don't know what I am looking for here - I know that whether to do amnio is a highly personal question and the decision could be motivated by myriad factors.  Maybe I am just looking for some other considerations that I haven't thought about?  Thanks for any thoughts you may have.

UPDATE on 6/10:  After a ton of soul-searching, tears and research, DH and I have decided not to go through with the amnio.  Aside from the fact that these numbers are very good considering my age (38), many other factors have come into play here, and I decided that I just can't do it.  This is definitely not a judgment on anyone who does choose amnio - it's just not for me (I'm happy to discuss my reasons via PM if anyone is interested).  I know that whatever comes our way, we will handle it.  I just need to learn to let go of control here - it is totally out of character for me, but I think this may be my first lesson in parenting.  Thanks for everyone who shared their thoughts with me - I definitely appreciate it!

Peppernut

Your story reminds me of mine with Margaux, and why I skipped the NT this time.

I didn't realize I'd freak out so much.  It's funny, in terms of a horse race, those are some great odds... but they're still odds, and odds say "gamble," and I've never been a gambler.  We ended up with the amnio.  Everything went just fine with it, and I did have peace of mind afterward.  It wasn't even that we'd terminate, though with some of the nastier trisonomies that was something we'd consider.  It was that we wanted to be prepared, have the names of doctors we might need, deliver at the best hospital, etc.  Margaux turned out just fine, though she does have a heart issue.

With the new one, we just said "heck with it" and got a CVS.  Also an easy procedure, no complication.  

Good luck! 

JoAnna914

Peppernut:

Your story reminds me of mine with Margaux, and why I skipped the NT this time.

I didn't realize I'd freak out so much.  It's funny, in terms of a horse race, those are some great odds... but they're still odds, and odds say "gamble," and I've never been a gambler.  We ended up with the amnio.  Everything went just fine with it, and I did have peace of mind afterward.  It wasn't even that we'd terminate, though with some of the nastier trisonomies that was something we'd consider.  It was that we wanted to be prepared, have the names of doctors we might need, deliver at the best hospital, etc.  Margaux turned out just fine, though she does have a heart issue.

With the new one, we just said "heck with it" and got a CVS.  Also an easy procedure, no complication.  

Good luck! 

Thank you so much for your story, and for even bringing up the topic of termination.  I know that is such a taboo subject, but it is something we, too, would consider for the nasty Trisomies.  My doc does not do the CVS procedure, so it's got to be amnio.  Another option I have is to the next in the series of sequential scans at 16 weeks before doing the amnio, but that's just odds again, and wouldn't do anything for my sense of security.

LauraLynneC

Given the tone of your message (and how I read it) I would assume you're leaning towards amnio - peace of mind for the remainder of your pregnancy is everyone's goal!  Amnio is scary but the good news is that it's come a long ways and the risks have been minimalized.  

If I'm reading you right, I would go for the amnio and trust your doctor with it.  Then you'll have the "for sure" answers you're looking for. 

Just my .02...

clipingirl

Hi JoAnna....I can relate. I had my NT done and the genetic counselor said numbers 'were great'. Well, I finally decided (after many posts here and 7 weeks of agonizing) to do the amnio. I'm actually heading out in 30 minutes to get it done. I'm in the mind set, I want to know--regardless. I am actually not worried about the miscarriage risk (although I was before I decided to go forward). I know I'll be relieved and/or need to make a plan. Either way I'm glad I'm doing it. I wish you the best in your decision. My advice would be let the information simmer a few weeks. I found, for me anyway, I was more able to decide on what to do next after the initial information shock wore off a bit. Good luck with your decision, I'm sure it will be right for you!

JoAnna914

Thanks for sharing your impressions, LauraLynne.  I made this amnio appointment when I was 8 weeks pregnant.  There was not even a hesitation on my part at that time.  I don't know why I've started to question that decision - it may be that my mother and sister have communicated to me how nervous they are about it, with my mother going so far as to say she would never do it (she's very . . . judgy.)  Usually, I would let this roll off my back and ignore her, but it's gotten into my head now.  But you're right - I do want the benefits of the information I can get from the amnio.  It's just the risks that I am grappling with.  I know I can't have it both ways.

 

Thank you for sharing your experience with me, clipingirl - good luck this afternoon and I look forward to hearing that everything went great for you!

SFAug07

I have had two amnios because we needed to know. I am so glad to have reassurance and was able to relax after it. We had set some limits of risk that we would feel comfortable with (for us, it was 1:1,000 or better for DS) and we didn't hit these marks. Obviously it's very personal and everybody has different comfort levels.

cmorganopie

I am currently in my 14th week with number 3. I had the first trimester screening and NFT ultrasound last week. Got a call on thursday that puts my risk for downs syndrome at 1/7. I will be 37 at delivery.I am extremely freaked out but have a f/u us scheduled for the 15th of June. Will I have an amniocentesis? I dont know, I do know that what ever we find  is not going to change my choice to have this child. The only benefit I can see with the amnio is that I will have a clearer picture of what is happening. Good lick to you. Be strong.

 

Owl38

I can tell you that 1) knowing for sure is a huge relief, but it does not stop the worry that there are other problems and 2) deciding to the CVS with the higher miscarriage risk was nervewracking- what if we miscarried because it was our choice to do this procedure? That would have been hard to deal with.  BUT, we had very high risks (1/170 trisomy and 1/5 downs) so that made our decision easier.  In your case, your numbers are BETTER than the average age risk, and amnio is much safer.  I hope you feel good about whatever decision you come to- it will be the right one for you. 

JoAnna914

Update in original post - thanks to everyone who shared their thoughts.

Peppernut

Those really are great numbers.  I'm glad you made your decision!  The 20-week anatomy scan can help ease a lot of your worries as well, that's a fun scan!