I knew I shouldn't let myself believe in miracles...or read that book. I read one fucking chapter and disaster has hit. I get a call from the OB's office this morning that my Dr. has requested I go see him to discuss my test results. Um what?! The receptionist wouldn't give me any information as to what results so I called A., my sister and dad in full on hyperventilation mode. Luckily dad was able to get a hold of the dr who said there was a discrepancy between my first NT Scan results and his.
I knew this was going to happen. I predicted this exact scenario two months ago which is why I asked not to be told the results from the REs office. To recap, RE measured the NT fluid at 2.6 and OB at 1.7. OB did FST screening and the results came back in two weeks with a risk of 1:2400. RE did IPS screening, but when I didnt go back for the second set of bloodwork, the lab did FST and the results were just sent to the OB. The risk came back at 1:55. Holy fuck. Cue instant hyperventilating and extreme crying.
We managed to get a hold of the RE scan from the radiologist and after careful review, my OB trusts his results as the other was over magnetized and unable to get a clear view - but I don't know. You can't unheard a number like 1:55. All the bloodwork came back with the same normal readings on both tests and the other information was comparable as well.
In my logical head I know not to trust the RE. I know that they have fucked me over time and time again, but still. OB stands by his scan, but I just don't know what to do. Inam debating an amnio. On the one hand we find out definitively whether or not the baby has Downs, but there is a 1:900 risk of miscarriage. My OB is an MFM and has done thousands of amnios, but there is still a risk. He told me with an amnio you get the results in 2 days, but Then you have the added worry of miscarriage. I honestly don't know what I would do if I learned that my baby had Downs. I am not sure if I would terminate or not, not sure if I feel comfortable bringing an unhealthy child into the world, not sure how I feel about knowing in advance over not knowing. There are so many thoughts in my head that I just don't know what to think or do. All I know is that if I do have the amnio and miscarry regardless of the findings I won't recover, but if I don't I'm not sure how I will survive the next 16ish weeks.
I don't need any judgement, just advice. What would you do? I knew this was all too good to be true!
-R.
*hugs* The uncertainty sucks.
ReplyDeleteI guess the question is how do you handle uncertainty? From your second to last paragraph, it sounds like you don't want to do the amnio because of the risk of miscarriage. So maybe that means you should read about Down Syndrome and then work on keeping in mind that even if the RE scan is right, you have less than a 2% chance of having a baby with Down Syndrome.
I totally get the fear of miscarriage. Having had two, I will have to think very hard about whether or not I'm willing to risk amnio/CVS.
Sending positive thoughts your way as you wrestle with this. *hugs*
It sounds like a very stressful time. I think with regards to your question about the amnio, I think you have to ask yourself what you will do with the information the test would provide. Is it always the case that more data is better? I'm not sure. Unless you have a very clear idea of what you would do with the information, I'm not sure it is worth the risk. That's just my opinion. I wish you strength and clarity as you make this decision.
ReplyDeleteAfter what we have been through, I would never do an amnio. My neighbor had a 1 in 2 chance for one of her daughters and she is just fine.
ReplyDeleteT
So sorry you have to go through this. I also got very high risk results and we have an amnio scheduled in three weeks. I am a planner and need to know either way. I pray that we both just have fasle positives and everything is healthy! HUGS!!!
ReplyDeleteOk, small heart attack when I read your heading. You may recall that I went thru this he'll when my first tri screen showed 1:6 risk. It's not clear to me what your 1:55 is based on--not familiar with what FST and IPS are. Here in Calif they use PAPP-A, hcg, maternal age, and NT. Is the 1:55 mostly b/c of the one NT that was high? In my case my high risk was basically 100% b/c of really low PAPP-A. As you know all turned out to be well.
ReplyDeleteIt's a tough decision. 1:900 is very low risk--my peri group had a 1:350 risk. If you had only the one result of 1:55 I would recommend doing amnio-- but you also have another result with a low risk. Again, it's not clear to me what those results are based on. At least you are at a point where you can do am ip right now and get FISH results quickly.
A 1 in 55 chance, while worse than most people and worse than you'd like, is a 54 in 55 chance that everything is FINE.
ReplyDeleteA 1 in 50000 chance.... if you're the one, then it doesn't matter that the odds were low. There are no guarantees.
I couldn't have gone through with an amnio. The risk varies too much; from 1 in 50 in some places to 1 in 200 (I've never heard of teh risk being as low as 1 in 900, but it might well be true for your dr). Which is ironic, as if I knew I was carrying a baby with Downs I would seriously consider termination.
... or at least I would have done before babyloss. I'm not sure if that still holds true these days.
Can I reiterate this?
'A 1 in 55 chance, while worse than most people and worse than you'd like, is a 54 in 55 chance that everything is FINE.'
It's a shitty decision to have to make.
At the end of the day - if you decide you *wouldn't* terminate if the baby has Downs, then it's not worth the risk.
Sending hugs. I'll be here whatever you decide. Whatever happens. xxx
Ok, did some googling. FTS = the same as Calif 1st tri screen. I reread your post and it sounds like the blood test results were normal--meaning your 1:55 is mostly b/c of the one NT. If that is the case I would lean towards no amnio. Sounds like your MFM OB is very experienced--his NT is probably the accurate one.
ReplyDeleteAs for amnio--I too had 2 m/c and used to feel the same way-- no way would I take the risk. But you really can't judge until you've actually experienced being told you are at high risk. Luckily my amnio went fine w/ no probs.
Sorry you are dealing with this stress R.
I'm so sorry there is this stress. Have there been any other markers on the sonos? I swear, every sono with BabyHope, they found something wrong. She turned out fine, and if I could do it all over again, I would skip about half the sonos and just have enjoyed the pregnancy. I know that's impossible - I lived it - but I'm hoping it's just a mis-measurement issue. I'd trust the OB in this situation 10x over the RE.
ReplyDeleteI'd skip the amnio if I was you - for now. I'd be trusting your OB, and also thinking about how you can have an amnio at a later stage if need be. Provided everything looked good at the anatomy scan I'd just carry on, if there are any soft markers at that stage,think about an amnio...
ReplyDeleteOh R I'm so sorry you have to go through this. I really don't have any advice, and of course no judgment, just concern and care and hugs and support for you.
ReplyDeletei will not tell you what to do or not to do, as it is up to you and A. I understand that this is an incredibly stressful time for you - please take care and trust your heart.
ReplyDeleteRJ
Ugh...I just wrote this whole comment and then blogger ate it! But R...I am so ready to punch someone for you already. I am sick and tired of seeing my good friend being slapped around. I am just so angry for you. I know...I'm not helping. Okay so here it goes again. Knowing the whole story...in my heart of hearts its all good. I am not minimizing it I just truly believe Lil Miss is 1000% healthy but I'd need the amnio to prove it. Because if I were in your shoes right now, my brain would say 1:55 risk...you might as well tell me 1:1 as my brain does not know the difference. The risks of m/c for the amnio are extremely low. You can't go on like this...Let me worry about the miscarriage risks. I am almost ready to jump on a plane and just give you a big hug. But I know you will do what you think is best for you and I will be right there with you.
ReplyDeleteOh dear. So sorry you are going through this. At first I wanted to tell you what I would do but we're all so different. I know whatever choice you and your hubs make will be the right one for you guys. Nobody else knows what's best. Trust each others intuition. Keep your head up. Lotsa happy thoughts and prayers for you. Keep your head up.
ReplyDeleteNo advice on amnio vs. no amnio. You certainly know the risks and benefits. I feel that is a decision only you can make. I can tell you that in my pregnancy, inaccurate scans caused me lots of stress and everything turned out fine (I know that given this information in the place that you are, my brain would have worried that I that rare person where something would really be wrong. But I share it as my experience.) At my 20 week u/s, the regular tech was not available and the fill-in tech measured one twin in the 10th perc. and one in the 5th. The doctor was not sure if smaller DD was going to make it. Two weeks later, the regular tech measured them in the 50th and 65th. They told me they were sorry for the error. My neighbor had a similar experience. She was actually induced at 37 weeks with a singleton b/c they were worried about IUGR. Once baby was born, she was nearly 2 lbs heavier than they estimated and was born well within a healthy range at 6 lbs 11 oz. I would definitely trust the scan from the doc with more experience doing these scans. But only you will know what will give you the most peace of mind.
ReplyDeleteAs a completely uninvolved, but long-time reader who has been following along for ages - WHY ARE YOU EVEN WORRYING ABOUT THIS???? It was clear from your original post about the quasi-NT scan at the RE's office that they did not know what they were doing, and if I am understanding correctly, your increased risk (according to their calculations) is based completely upon the NT measurement they took. The NT is a very specific and difficult measurement that requires lots of very specific training to do it correctly - and cannot, and should not, be done by a regular ultrasound technician. (Even very well meaning ones who were I'm sure very well intentioned and just trying to ease your nerves at the time.) I would trust your very well-trained MFM and not give this another thought.
ReplyDeleteAnd once you have this wonderful, healthy baby in your arms, I hope you go give your REs office some serious feedback that they should not be trying to do things they are not trained for!
R, I so feel for you. In my heart, I feel that Little Miss IT is meant to be and is totally perfect. I'm not a religious person but somehow feel that God is in control of this and things will be well. Because of this, I feel that an ammio is a huge gamble you don't really need to take. But I'm not in your shoes and will absolutely not pass judgement on whatever decision you make. Thinking of you.xxx
ReplyDeleter,
ReplyDeleteagain, its up to how you ultimately feel about it.
amnio was not an option for us, either way, but they exist for a reason, and many women gain a lot of peace of mind from having one.
since you asked, personally, with your history, i would not do it.
the screening is just screening- the amnio is an actual procedure that carries physical risk to the pregnancy. because it seems as if that 1:55 is actually based solely on the errant NT scan, i would try to disregard it. lots of women get terrible odds solely on their calender age. so, that's my opinion.
but, if you feel as if you need the amnio, i support you 1000%! i am sorry you had to hear that number, like you say, its hard to 'unhear'.
will be thinking of you!
-soulshine
R...okay just re-read your post again. And again. If it was me, I think given that you would never recover from a miscarriage due to an amnio (again slight risk with 1:900 odds), I wouldn't do it. That test was a schmoze compared to the OB's scan and blood test. If both blood tests came back with normal results from both RE and OB that alone would be enough for me to believe that the RE's scan is incorrect. Why? Because of the HUGE discrepancy of the risk results. Plus the RE's blood test result was not the full test result as you did not go back and do the second set. If you were over the age of 35, I might be a little more concerned. So now after a few winks of sleep and re-reading your post, I think the RE's results are totally out of whack and not worth the amnio risk...not even close. In fact, because the RE's test results were not even 100% complete (as you did not get the second b/t), I am pissed that they even are making a fuss out of this. Also, is your RE's ultrasound technician authorized to perform NT scan results? I had to do two NT scans because the first clinic I was sent to did not have appropriate credentials to perform the NT scan as part of the maternal screen testing program here in SK.
ReplyDeleteI'm so sorry you're having to deal with this. I *totally* understand your reaction. It always feels like you might be the 1 in whatever number they cite.
ReplyDeleteI think you're right about having to make your own decision about the amnio based on what you would do with that information.
That having been said, I would advise shopping around for the best damn MFM you can find to do it if you decide to (and maybe you already feel like your OB/MFM is that good.....it seems like they might be). Call and ask about the miscarriage rate for that doctor and/or that practice. We did this when we decided to do the CVS test. My MFM practice had a 1:450 or something miscarriage rate for CVS. And that's a whole lot better than what the books say is an average 1:100 rate (I'm convinced so many of the books are so horribly out of date.)
And maybe even if you do really trust your current OB/MFM, I'd also maybe seek a third opinion with a really, really good MFM and their genetic counselor before making any decisions to do more testing. I don't remember where you're located, but I felt really, really good about our MFM in the Washington, DC area and I'd be happy to share the name if that helps.
Thinking of you and hoping (and actually very much believing) that all of this will turn out ok.
Ugh this sucks, I'm so sorry. What would I do? Me, with my history and everything else, I'd do the amnio. I think the not knowing would be worse for me, I'd be so stressed. But given everything you've been through, knowing your history, I'm not sure if I would tell you to do it. And even with 1 in 55 chance, that mean the vast majority, 54, will be normal.
ReplyDeleteGood luck making a decision, it is not easy. ((((hugs))))
Advice from the person who experienced this:
ReplyDeleteI would suggest to do the amnio and if 100% baby has a congenital problem, terminate...
nothing I can say will ease your pain....big big hug...nobody never should go through this nightmare...it took me 10 years to recover....I am still moaning the loss of our baby-girl...I just learned how to live with this pain…
I'm so sorry you're having this scare. My two cents are that, as impossible as I know it is to focus on, a 1:55 chance is still, as others have said, a 54:55 chance that your baby is fine. If it were me I would skip the amnio - because at least that's something I can control. But I also know how I would answer the question about whether I would keep the baby if it had Downs. (I would, I have a close friend who has a 6 mth old w/ Downs and he is the most adorable, sweet, loving baby who has brought nothing but joy to them.) My sister had terrifying test results from the nuchal test - they started talking w/ her about termination, etc... And she had a perfectly healthy, wonderful, perfect in every way boy. The nuchal test has a pretty wide margin of error so if all your bloodwork came back as normal, and everything else looks good, then my advice would be to trust Mother Nature and know the odds are still hugely in your favor.
ReplyDeleteThinking of you...
Elizabeth
Long time lurker here. First off I am thinking of you and wish I could give you a big HUG. We have exchanged emails before regarding CCRM. I live in the same city as you. I had 4 miscarriages and then got pregnant after our 2nd IVF. I was told I had poor eggs so I was so anxious that the baby had something wrong with it. I could not stand the constant stress of worry and anxiety so I opted for the amnio. I figured the stress was not good for me or the baby. I had it done at Mount Siani where the Dr.'s are very good. It was a very easy procedure. The results came back that the baby was normal and it felt like the weight of the world was lifted off my shoulders. Finally I was able to allow myself to bond with the baby. I had an amazing geneticist at Mount Siani; Dr. Chitiat. I would recommend him, even just to talk through your test results. So for me the amnio was the right thing to do. Although I understand it is not for everyone. I wish you the best as you decide what is right for you. I just hope you are able to relax and enjoy the pregnancy. You sure deserve it.
ReplyDeleteHUGS
I am thinking of you and sending hugs.
ReplyDeleteAmy x
Amnio isnt perfect.
ReplyDeleteThe amnio that was performed for the pregnancy I lost due to multiple genetic anomalies - so many so she was deemed "incompatible with life" showed her as perfectly healthy.
I am so so very sorry for this scare R. Hold tight. We dont know a thing yet.
Grrr this sucks, I'm thus i am sorry. What can I actually do? Myself, using my personal history and the rest, I might perform amnio. I do believe the not knowing can be even worse for me personally, I'd be thus burdened. Yet given every little thing you're through, realizing the history, I not really know basically would certainly tell you to do it. And in many cases together with 1 in Fifty five chance, this mean the vast majority, 54, will likely be normal.
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