waiting for the MW to phone... [Archive] - MotheringDotCommunity Forums

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Ksenia

11-25-2005, 09:33 PM

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

11-25-2005, 11:40 PM

:hug

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?)

:hug

LuckyMommaToo

11-26-2005, 12:00 AM

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*~

11-26-2005, 04:44 AM

:hug 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. :bang

Good luck sweetie. Hoping for good news for you.

Ksenia

11-26-2005, 05:48 AM

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 :crying.

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...

busybusymomma

11-26-2005, 07:51 AM

Aw hugs Ksenia. :Hug 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. :hug

luckylady

11-26-2005, 08:53 AM

:hug - 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. :) :hug mama.

zonapellucida

11-26-2005, 09:28 AM

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

ThatLinGirl

11-26-2005, 09:36 AM

I'm sorry - how frustrating. :hug 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. :hug

Ksenia

11-26-2005, 10:28 PM

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

11-26-2005, 10:41 PM

oh gah
:Hug

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 :( :(
:Hug
:Hug

Lauren

LuckyMommaToo

11-26-2005, 10:43 PM

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*~

11-27-2005, 05:57 AM

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. :hug

Ksenia

11-27-2005, 06:52 AM

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).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.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.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.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.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.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.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.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.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 :o 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

11-27-2005, 07:39 AM

:) :hugs

busybusymomma

11-27-2005, 07:59 AM

oh my Ksenia. :Hug 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.

:Hug

Unreal

11-27-2005, 08:20 AM

:Hug

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 :(

:hug

ThatLinGirl

11-27-2005, 08:54 AM

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. :hug

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. :hug

Momto1and1ontheway

11-27-2005, 10:32 AM

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! :Hug

Ksenia

11-27-2005, 12:02 PM

happygirls

11-27-2005, 01:47 PM

hi-
i'm new to the group, but i had a false positive for downs with my 2nd (1/116). we had the amnio. my dad is a retired OB, and he said the risk of a miscarriage was less than 1/200 if you had an experienced perinatologist. it seemed to take forever to get the results- 10 days. it was just wretched.
as you know, chances are you have a 46 chromosome baby in there! but i KNOW it doesn't help.
i had to know; i took the risk.
i'll be thinking about you.
amanda

NYCVeg

11-27-2005, 07:14 PM

Ksenia...:hug

Please don't feel pressured into an amnio you don't want! (If you do feel you want it, that's another thing, of course). 5% (1 in 20 women) test high risk for Down's, but 95-98% of those "positives" are false, while the miscarriage rate from amnio is somewhat high (to me, at least). If there no way you can find someone to do a level 2 u/s. Many providers in the u/s go straight to the level 2 u/s rather than the amnio, b/c the risks are much lower and they can detect/rule out Down's.

Would knowing for certain whether or not the baby has Down's change your plans for the pregnancy? If not, I would ask myself if the benefits of the amnio are worth the risk.

I'm sorry your mw is pressuring you/dismissing your concerns. For what it's worth, my sister (who loves the intervention-friendly OB/hospital model) tested high risk for the Down's test and declined the amnio. Her daughter is 2 and perfectly healthy.

peypeymama

11-27-2005, 09:10 PM

I wanted to give you a hug :hug & a little prayer :1praying: .

KatSG

11-28-2005, 12:39 PM

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.

Ah, I get it now. I was about to give you a pep talk about DEMANDING a level II (if you wanted it). Ah, the pros and cons of universal health care...

I can't tell you what I would do in your situation because I know now, in the middle of my second pg, that I'm doing many things differently and I can't explain why. I had the quad screen last time and was very comfortable with what the results would tell me (I also came back low risk for everything). This time, I declined because I just wasn't comfortable with that level of ambiguity, but took the neuchal fold ultrasound. It was a good move on my part, as we discovered I have complete previa, so I know now that I have to be careful about some activities.

Now, PLEASE someone correct me if I'm wrong, but isn't the mother's age a factor in determining the risk factors in the AFP? You haven't said how old you are. Are you at the age where it automatically increases your risk factor, at least on paper? Perhaps you can ask if this is the main determining factor in the elevated risk level of your results.

I'm sorry you're going through so much stress. Try to take care of yourself--camomile tea, a long walk, a funny movie, a friend who will let you vent until it's all gone. ((HUGS!))

NYCVeg

11-28-2005, 01:34 PM

Ksenia

11-29-2005, 01:05 PM

Now, PLEASE someone correct me if I'm wrong, but isn't the mother's age a factor in determining the risk factors in the AFP? You haven't said how old you are. Are you at the age where it automatically increases your risk factor, at least on paper? Perhaps you can ask if this is the main determining factor in the elevated risk level of your results.I am 37 and yes, age is definitely calculated in the triple screen results. You are right in saying that my age automatically increases my risk factor in the triple screen and makes it much more likely that I will fall above the cutoff of "acceptable risk" for tested conditions, which is defined as the risk of a 35 yo (1 in 270). So the test didn't really add much info. But having had a positive test, my risk for Down's is 2% - small but not trivial.

After a totally emotionally wracking weekend I decided to go ahead with the tests. I have really mixed feelings about it but I'm relieved to have made a decision. My dh didn't pressure me into accepting the tests, but his preferences were a big factor in my deciding to go ahead with the tests. He has a lot of personal background that is playing into this. He has known quite a few families who have had Down's babies (unlike me - I don't have a lot of preconceptions). He also worked in a home for autistic adults, some of which were very low-functioning Down's people. Down's people are at increased risk for autism, apparently.

Anyway, I strongly wanted to avoid getting into all the diagnostics, but after much reflection I realized that I honestly don't know what I would want to do if I knew 100% for sure that I was carrying a Down baby - and that I would need to look at how it would affect my whole family - my dh and my ds - not just how it would affect me. I grew up with a brother who had extremely serious congenital heart defects and it was really brutal for everyone in our family. So I would never sugarcoat what it would be like to raise a truly high needs child.

I had the ultrasound yesterday but I got the tech to keep it really short and skip most of the standard routine that they do. Next Tuesday I will have the amnio. I am concerned about the 1 in 200 risk of miscarriage, but I feel that I can take steps to minimize my personal risk by resting and managing my stress afterwards.

I believe that my baby is healthy and normal and I'm trying to keep focusing on that, and not let all this get in the way of celebrating this blessing.

busybusymomma

11-29-2005, 01:16 PM

Wishing you the best in the coming week, lots of peace and relaxation! :Hug

~*max*~

11-29-2005, 03:55 PM

ksenia, we'll be thinking of you & hoping for the best. It sounds like you have a solid plan in place. I know sometimes it is a relief just to make the decision. Take good care of yourself, and keep up the positve thoughts.

NYCVeg

11-29-2005, 06:04 PM

Also wishing you the best...the important thing is that you've come to a decision that YOU'RE comfortable with. :hug

Sydnee

11-29-2005, 08:55 PM

:hug to you mama, what a hard decision to make, but I'm so happy that it's one you feel good about. :love We'll be thinking of you!! :love

babydoll

11-30-2005, 12:36 AM

:hug

I know this is way too much stress during what should be such a happy time -especially this close to the holidays makes it even more stressful.

I am debating having this test as well. I took it with dd and it came back saying "although it is within the normal limits, it is higher than normal for her age group" I think it was risk as if I was 29 and I was 25 when the test was done. I went to a larger city and got a level 2 u/s and met with a genetic counselor. The u/s was normal and she does not have it. It still stressed me out. THe only reason for me to do the test at this point would be to go on for further tests -( i.e. level 2 ultrasound). I personally would not do the amnio unless further less invasive tests still pointed to Down's (I know that the healthcare people can be persuasive when you are most vulnerable though). My reason for knowing would be to deliver at a high risk center out of town. It is so scary to think of all the things that could go wrong...
I will keep you in my prayers and hope everything goes well for you!

Babydoll

:1praying:

mel~3jumpin beans

11-30-2005, 09:12 AM

At your ultrasound did they say anything about seeing the nasal bone or the thickness at the neck??? Alot of times this is a good indicator. I had a false positive last pregnancy and had a level 2 U/S which pretty much ruled out downs. I was 37 at the time of delivery. This time I decided that I wanted to know early enough in case I was forced to make that kind of decision and had the CVS testing(like an early amnio) I couldnt take all the worry that came along with the results and the further testing. I will be a few days shy of my 40th birthday when my DD is born.

mamacatsbaby

11-30-2005, 08:31 PM

Ksenia

12-06-2005, 10:58 AM

At the last minute, I decided to cancel the amnio, which was scheduled today. What a relief...aaaah. Poor dh will spend the next 5 months worrying, but at least he is not pregnant.

alliei

12-06-2005, 12:00 PM

Hugs....

I hope DH starts to feel more relieved too. Are you going to do a special ultrasound? I am glad you are feeling better about all of this.

Allie

Unreal

12-06-2005, 12:10 PM

:hug
You sound so relieved in your post!

:hug :hug :hug

busybusymomma

12-06-2005, 12:57 PM

:yeah:

:Hug

Ksenia

12-06-2005, 01:00 PM

Are you going to do a special ultrasound?I don't know...it might not be offered to me. I live in Canada and a lot of the tests and procedures offered are very standardized and you can't necessarily get tests/procedures that you ask for. I probably won't be pursuing that though. I don't think I could go through a second trimester abortion so it might not be worth it.

mamacatsbaby

12-06-2005, 05:15 PM

I am so glad that you seem more relieved mama. :hug

brandonsmommy810

12-10-2005, 06:00 PM

Hang in there!! There are SO many false positives with that test!! My doctor will schedule a level 2 sono before an amnio. She told me she has never had a patient that had abnormal results from the test, then normal results from the level 2 have a baby born with any problems.
I hope your MW calls back soon, and everything works out just fine!! :)

eorr

12-12-2005, 12:14 AM

Take care, Ksenia. Keep trusting yourself and your body and your baby. I have a lot of respect for you and am so glad that you made a decision you are comfortable with. The way I know I made a good decision is how comfortable/relaxed I feel afterwards. It sounded in your post as though that's what this was. I hope you get more support in the next few months, but it seems to me that you're trusting yourself more and more, which is the most important thing.
I know how frustrating it was for me to be standing in front of the nurse in a room full of people and being told that basically I was an awful, selfish person for not wanting the HIV test and the cystic fibrosis test. I was so hurt that I would be treated that way and so unprepared for it. Don't discount that aspect of your emotional response to your caregivers.
I think it's great that you're taking into account the thoughts and feelings of those close to you, and I think you should take comfort in knowing that you made the right decision for yourself at the time (having taken so many factors into consideration). Have a very happy holiday season and take good care. :thumb