waiting for the MW to phone...

[flowmom]

Well, I stupidly agreed to take the alpha feto-protein triple screen test because my dh wanted me to. I got home and found a message from my MW calling about my results. And now she hasn't called me back when she said she would.

It's a frustrating stress-inducing test because it doesn't tell you anything but it raises fears about Down's syndrome, spina bifida and trisomie 18. If it comes up higher than normal dh will probably want me to take an amniocentesis but I don't want to because there's at least a 1 in 200 chance of damaging the baby from the procedure. Plus if you find out that your baby isn't normal, then what do you do?? A horrible decision to make after everyone knows you're pregnant and you can feel the baby moving.

It really bothers me that I'm wasting any energy worrying about this. I totally understand why women choose to do unassisted pregnancies. It's so pointless worrying about things that you can't do anything about.

[Unreal]

did she ever call you back?

I refused all that testing when it was offered (not by my midwife)
It was the same kind of thing as what you are saying--how would knowing make a difference? My baby is my baby, regardless.

I hope all the results are fine (can they do a retest before an amnio to rule out a false positive?)

[LuckyMommaToo]

Hang in there -- I'm sure it's nothing. I've had three friends with false positives on that test. If DH is insistent, maybe you could do a level 2 u/s? Those show a lot...

Good luck.
-Erin

[~*max*~]

ksenia. That's gotta be tough. I hope you hear soon. With my last pregnancy I did the triple screen, and my pregnancy dates were off, so that messed up the results. Could be any reason why she is calling, but hopefully just to tell you all is well. I got talked into the quad screen this time, and I too and waiting for the rsults.

Good luck sweetie. Hoping for good news for you.

[flowmom]

Thanks for the kind words mamas. My midwife didn't call back so here I am at 3:30 AM wide awake and stressed out . I'm sure there's a good reason that she didn't call when she said she would (like another mama needing help) but it's kinda frustrating because I'm now dealing with three midwives this time around, yet there wasn't anyone to give me the results. I wish she had just told my dh the results when she talked to him on the phone.

I know she wouldn't have called unless there was an issue with the results. It's either "positive" or I guess I have a faint hope that there was a problem with the lab messing up the test results or something. I know there's a high rate of false positives, but it just opens a mental door that I really wanted to keep closed.

The worst thing is that when dh finally called last night from work (he works some night shifts) he just acted like it was nothing. I was feeling really emotional and talking about being frustrated about having taken the test in the first place. In talking about the test it was really obvious that he didn't really know anything about it being controversial because of the stress that it causes mamas, etc. so I asked him "you wanted me to take this test but I'll bet you didn't even read a single article about it?". Then he accused me of pulling rank on him and said "well I guess I'm not managing to cheer you up" and hung up on me .

My dh is a great guy but we've had a lot of trouble connecting since ds was born. During this pregnancy I've felt really alone emotionally and we've had some painful arguments about birth planning, etc. I just feel crappy when I get treated that way - I'm not perfect and tend to say things in the heat of the moment but I ask myself what I've done to deserve being treated like that...

[Peppamint]

Aw hugs Ksenia. I hope your test results come out a-okay and that you and dh can grow closer. My dh and I had a hard time during ds' pregnancy... it wasn't so much related to the pregnancy but just job stress he was under and the job stress I was under but we really didn't connect during that time. It's really awful when you and your partner aren't on the same page.

[luckylady]

- try to stop stressing! When I had all my testing done, my MW called and left a message saying she had my results and would try me later. I freaked out because surely she would have just said everything was fine on the message machine! But everything was OK...

I hope everything is fine. Sorry about you and DH - my DH and I went through something similar for 3 years after DD was born - because he disagreed with how I parented her!!! But of course now he sees I was right. mama.

[zonapellucida]

UGH! This is one reason why I have signed off on all testing.... (((((((HUGS))))))))))

[ThatLinGirl]

I'm sorry - how frustrating. I really really hope that she was just calling to give you good news and didn't think about how her message would frighten you.

I *totally* understand not wanting to do an amnio - but there certainly are reasons some might, even if they wouldn't terminate. If a mama was going to deliver a baby with a major health issue and knew ahead of time, they might choose to deliver in a specific hospital w/ certain medical specialists standing by rather than a birth center, etc. They can also do a level 2 ultrasound that could possibly give you some more information in a less invasive way.

I do hate the term false positive with this test though, it is quite inaccurate. The risk ratio is just that, a ratio. 1:40 and delivering a healthy baby just means you are one of the 39 rather than the 1.

Hoping you get a nice HIGH number back with that ratio.

[flowmom]

Well, I just finally talked to the MW tonight. My triple screen results are "non-reassuring" for Down syndrome. She wants me to get a dating ultrasound on Monday or Tuesday (I had previously declined the ultrasound). Then she wants me to get an amniocentesis the week after. She didn't really open the door to my potentially declining, though it's my right of course. Then I get to wait a week or two for the results. Merry Christmas. I don't know if I have the guts to stand up to the medicos and my dh and just say no to all this stress-inducing drama.

[Unreal]

oh gah


Maybe you can ask her what can be gained by the amnio at this point?
I can see doing the U/S..there are things they can tell from that too.
But the risks of an amnio just to find out about Downs?
It wouldn't tell you how severely your babe would be affected. It wouldn't tell you anything at all--except the same thing those of us who aren't testing have to be prepared for--the same thing we ALL have to come to terms with--
Some babes need medical attention when they are first born.
I think we all need to be prepared for that posibility.

Even if the amnio came back negative for downs--you would still have to be prepared on some level for your child having medical needs....It is a sad thing to think about, but it is reality.

I think that is what I would be asking the midwife at this point.
What, exactly, is the point of the amnio? Is it for YOUR knowledge, to make informed decisions? Or does it in some way affect her care plans for you?
If it is for you, then it is up to you...

and it sounds like you aren't sure about it.

Why not at least wait until after the holidays to make a decision...is there a reason to rush it?

I'm sorry you are getting pushed through all this...and I'm so so so sorry that you are having to go through such a stressful time right now



Lauren

[LuckyMommaToo]

Oh, I'm sorry it wasn't the news you wanted. Here's a link that may be helpful:
http://pregnancy.about.com/cs/afp/a/afptesting.htm

Personally, I still think you could think about declining the amnio. Esp if you're getting a level 2 u/s with a perinatologist. Did you ask the mw for your numbers specifically?

Hang in there. I know, easy for me to say.

I'm thinking of you.
-Erin

[~*max*~]

Biggest hugs ksenia. I am so sorry you are having this stress. Perhaps the dating ultrsound will clear up any concern? I think I told you, w/my last pregnany my triple screen came back concerning at first because I was less along pregnant than I thought. Hoping and praying all goes well for you. Please keep us posted, and any time you need to talk we are here.

[flowmom]

Thanks again for all the good wishes. It makes a difference to be able to share this with folks who can relate and don't have their own vested interests in the issue.

Here I am on another stop in insomnia-land at 4 AM. Me getting less sleep is turning out to be an unfortunate side effect of this test. I am frustrated with myself for getting worked up about this because there's a 98% chance that I don't have a Down syndrome baby. But I think the thing that's bothering me is having to make the decision about whether to go ahead with the ultrasound and amnio. And plus feeling like not doing all these tests was not presented to me as an option by the midwives (even though I know I can decline).

Originally Posted by Unreal

Maybe you can ask her what can be gained by the amnio at this point?

Well, as Lindsay said the results could affect one's birth plans about where to give birth if the baby was expected to have major complications.

Originally Posted by Unreal

I can see doing the U/S..there are things they can tell from that too.

Well, this would just be a standard ultrasound so it wouldn't really rule anything out.

Originally Posted by Unreal

But the risks of an amnio just to find out about Downs? It wouldn't tell you how severely your babe would be affected. It wouldn't tell you anything at all--except the same thing those of us who aren't testing have to be prepared for--the same thing we ALL have to come to terms with--Some babes need medical attention when they are first born.

Well, it's 99% accurate at diagnosing Down's and also diagnoses 10% of all occurrences of major "abnormalities". But for sure it doesn't rule out major issues. If there was a diagnosis of Down's they would follow up with a more detailed ultrasound at 18-20 weeks to determine if there are heart problems, etc.

Originally Posted by Unreal

Even if the amnio came back negative for downs--you would still have to be prepared on some level for your child having medical needs....

Absolutely. But dh has a specific concern about Down's for some reason. So that is why he pressured me into having the test in the first place.

Originally Posted by Unreal

What, exactly, is the point of the amnio? Is it for YOUR knowledge, to make informed decisions? Or does it in some way affect her care plans for you?....

I asked her about that and she said that it was basically for me to make decisions about termination and birth planning.

Originally Posted by Unreal

Why not at least wait until after the holidays to make a decision...is there a reason to rush it?

Amnio would be safer the sooner it's done. Plus the whole process will take about 3 or 4 weeks by the time I have the final result. If we get into Christmas the whole thing could be delayed by quite a long stretch of time.

Originally Posted by LuckyMommaToo

Esp if you're getting a level 2 u/s with a perinatologist.

Nope, the ultrasound would just a standard one. I am not being offered a level II ultrasound at this point.

Originally Posted by LuckyMommaToo

Did you ask the mw for your numbers specifically?

Yes, but she was vague about them and said that they were about the level to be expected for my age, which is close to the cutoff level that they consider to be acceptable for running the risk of miscarriage during the amnio (1 in 200). Other sources that I've read said that a non-reassuring result for Down's means a 1-2% chance of Down's.

Originally Posted by ~*max*~

Perhaps the dating ultrsound will clear up any concern?

I doubt it. I am positive about my dates because there wasn't much BDing going on that month and I had a negative test just a few days before the positive one, so in my mind all the info is totally consistent in terms of my conception date. I was TTC so I kept written records of everything - partly to be sure of my dates.

Basically at this point I am emotionally clear about not wanting to go ahead with the ultrasound or amnio. If I'm not doing the amnio there's not much point in doing the ultrasound as it will not add much information that I don't already have. I guess I am going to see how dh feels about things after sleeping on it (which he seems to be doing unlike me). I am so not good with the medical system - all this stuff is ultra-triggering for me.

[zonapellucida]

s

[Peppamint]

oh my Ksenia. I hope you were able to get some rest last night. So basically, you wouldn't even get a Level II u/s unless the amnio showed abnormalties? A level II u/s just seems so much less invasive than an amnio but maybe wouldn't show as much or give you actual numbers I guess.

I understand many parent's need to be prepared be using genetic testing, but I hate it when a mama spends so much time being stressed during what should be a joyful time.

I hope you can have peace in whatever decision you make- I do believe in all things pg, birth, parenting related that mom should have the majority vote because it directly affects our emotions, our bodies and our baby/child.

[Unreal]

I hope you are still off in dream-land right now

From your replies it sounds like you have definitely done a lot of thinking (and research) about the tests--I hope your dh can understand that and why you feel the way you do.

I wish you had more time to decide--I know with my DH if I let things sit and simmer in his head, he almost always comes around to agreeing with me (on baby stuff, that is...wish it worked for everything!)

The rush for the tests seem to give them even more importance--that if they weren't vital you could wait...rather than it just being the best window of opportunity

[ThatLinGirl]

Basically at this point I am emotionally clear about not wanting to go ahead with the ultrasound or amnio. If I'm not doing the amnio there's not much point in doing the ultrasound as it will not add much information that I don't already have. I guess I am going to see how dh feels about things after sleeping on it (which he seems to be doing unlike me). I am so not good with the medical system - all this stuff is ultra-triggering for me.

I'm so sorry.

How frustrating they won't do a level 2 u/s!

If your numbers are right at the cut-off - 1/200, keep in mind that 199 of those 200 babies are just fine. I know it is still so scary, but an elevated result near the cutoff means your baby is VERY likely to be perfectly fine.

[Momto1and1ontheway]

HI. I agree with the pp's. These are your choices to make. However, perhaps you could get the test results and get a consultation somewhere with a genetic counselor or fetal medicine specialist (don't know if they have them near, you, but you should have some sort of specialist that could at least look over your results to give you more information on what to do)? Obviously that would be your least invasive starting point and then you could see where to go from there? Sorry to not be of much help. Just know that we are hear for you bounce ideas off of any time (day or night)!! Take Care of yourself!

[flowmom]

Thanks for the ideas. To clarify, I live in Canada where we have a public health care system. It's awesome most of the time, but it means that procedures and testing are very standardized and the patient doesn't really have a lot of "buying power" when it comes to asking for different procedures etc. What I'm being offered is pretty much what I get, and there's no private health care system available where I can pay to get the tests that I want.