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My blood results are NOT what I was expecting!

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Post  Georgi Fri Jul 31, 2009 8:15 am

My blood results have come back as 1/120 chance of having a downs syndrome baby. I am shocked and scared, feeling very emotional and have no-one to talk to (at the moment) about this. My choices are I accept our fate or have a amniocentesis which carries a risk of miscarriage around 1/100-1/150.

I am so scared I just don't know what to think or do.
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Post  BethG Fri Jul 31, 2009 9:46 am

Georgi, I don't have any really good advice, but I *think* I've heard those test can be misleading. So maybe just think of it this way.....you'll have to have NINETEEN babies before that one in 20 will come up. Ok, it's lame, but I'm trying! (((HUGS)))
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Post  skyllar Fri Jul 31, 2009 9:58 am

Oh, Georgi - I am so sorry to read this. I don't have any first-hand help for you, but like Beth, I also heard that these tests are misleading. I read about several women on another pregnancy forum whose tests have come back like yours that had perfect babies. I personally am very skeptical of amniocenteses - as they are sooooo invasive. I wish I could help more. ((((Georgi))))
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Post  Angel Fri Jul 31, 2009 10:33 am

sweetheart,I ALSO tested positive with Teo.Those blood tests are renown for flase positives.I spent 2 weeks freaking out afterI had an amnio,everything turned out fine.They really do give an alarmingly high number of flse poitive,it makes me so angry because one wqould have thought with moddern technology we could eliminate this by now.Anyway,please try not to worry.I know it's a shock and had to not freak out,but I am sure everything wil be fine!hugsxxx
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Post  Georgi Fri Jul 31, 2009 11:08 am

Thank you for your responses. I don't really know what to say I guess it's still sinking in, Rich doesn't know as yet and I know I will feel so much better for talking to him. The midwife said that I could wait until after my 20 week scan before making a decision to whether I wanted to have the amniocenteses, they can check for what they call 'markers' on the ultra sound although statistics again, for every 1 in 5 down syndrome babies the ultra sound does not pick up on anything unusual. My way of thinking is 'IF' they didn't pick up on anything then I wouldn't have the amniocenteses but if they did I would go for it, don't get me wrong though losing this baby freaks me out and I know only too well that I could have the amniocenteses and lose a perfectly healthy baby. Sorry if I am not making sense I am at work, rushing to type and obviously still quite emotional. x
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Post  Angel Fri Jul 31, 2009 11:16 am

ok,more research.I have been looking at various journals and studie on this.The bassis of the three main screeners is really VERY reliant on one thing especially,timing.you HAVE to pretty much exactly be between 15-18 weeks,if you are a couple of days early/couple of days late either way in the fetal age,it can/will affect your results are the amounts measured are SO tiny that's what they rely onfor one of the tests,the other the mothers health COULD affect the levels.Either way,the reason there is such a big stink (een when I had it 6 years ago) is because it's so fragile in the result giving.Statistically you are not t high risk,not age wise or anythning else.SO my thought isgo for the correct dating and screening scan,see if they can pick anything up there and then see how you feel.I had an amnio,it was an wful stressful yet not painful experiene and the risk of MC where I had it done anyway was nothing to write home about,but of course,a risk is a risk either way and whatever makes you feel better you must do.I know it's hard.Please try and stay cam while bearing in mind that this may very well in fact is most likel just a mistake.But see what Rich sais,hopefully he will calm you downan you can make a decision together.I will ty n call you later babe.Thinking of you,everytihng's gonna be ok!
love you xx
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Post  Lily*Blossom Fri Jul 31, 2009 12:51 pm

Georgi, I am sorry you are so very worried sweetie. How awful. I do know that those tests can be very misleading sweetie, but that still does not mean that you don
have a reason to be feeling what you are feeling.

I believe that Bryony went through exactly the same thing with Rowan. Perhaps you could get in touch with her and see what she thinks??

We are here for you sweetie.

xxxxxxxxxxx
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Post  Lou Lou Fri Jul 31, 2009 2:24 pm

Yes Bryony did go through the same thing. I think it's a great idea to talk to her.

This is why we didn't do the downs test. It has SUCH a HIGH false positive rate that it's a shame that it's even done, in my opinion. My cousin had one done with her second baby and the doctor's were so sure Jon had downs they encouraged her to "consider her options". She was devastated but ultimately decided to have the baby...... When Jon was born he was PERFECTLY HEALTHY!!!!!!!!!!!!

I know you are scared. I would be too but you are a STRONG woman. You and Rich will make the right decisions about what steps you will take next.

Georgi you will be in my prayers. Love you!

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Post  Angel Fri Jul 31, 2009 2:32 pm

Yes they told me,I would have the option of a 'theraputic abortion' tats what it's called in France,it really threw me into a spin for 2 weeks until I had the amnio.Of course Teo ws born just fine! XXX
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Post  sparkles Fri Jul 31, 2009 4:49 pm

Georgi hun i am so sorry babe
like everyone said, they can be very misleading, i am here to support youwith any decision you make. Just think you are young, you have had a perfactly healthy baby already, im sure everything is fine xoxoxoxo
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Post  Georgi Fri Jul 31, 2009 5:10 pm

I've spoken to Bryony and her results were 1/35 chance and obviously it turned out to be a false alarm. Bryony had the amniocentesis to determine the results were in-accurate but I am just asking her whether she had the amniocentesis before or after her 20 week scan. I have to be honest I am feeling better about all of this, Rich is being very supportive and really does feel the results are very much in our favour of not having a downs baby, we have no family history on either side surely that has to count for something, I am aware what causes a baby to be downs syndrome but am I right in thinking you are at greater risk if you have someone in your family with the condition already??
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Post  Ginny Fri Jul 31, 2009 5:36 pm

OH Georgi, bless your heart, i am so sorry to hear that you are going through this! Cry I do also know of a lot of people who have had these false results on their blood tests. I am here for you and I will be praying that everything is perfectly fine with your little one! HUGS HUGS
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Post  Lily*Blossom Fri Jul 31, 2009 6:47 pm

Hi Georgi honey. I found this article about Down's syndrome and whether or not it's hereditary. Hope this answers some of your questions love.
http://www.siblings.it/english/dasapere/ereditarieta.htm

I'm glad you talked to Bryony. I hope it helped ease your mind a bit. Keep us posted, we love you.

xxxxxxxxx
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Post  Ginny Sat Aug 01, 2009 12:54 am

Also...out of curiosity, did you have hte quad screen or the triple screen? In the us they do the quad screen and it is more thorough...maybe you could see if they could do the quad screen instead? I feel good about this Georgi, and I really think that your baby is healthy and happy and I am so very sorry for this stress XXXXXXXXXX I am here for you!
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Post  pringle Sat Aug 01, 2009 6:26 am

I am so sorry to hear of your results, but I am thinking of you and hoping all will be well. ((hugs)) x x HUGS HUGS HUGS HUGS

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Post  Ginny Sat Aug 01, 2009 7:51 am

Georgi, I was thinking you had odd results with Theo too cuz they didn't know for sure when you O'd..is that a possibility this time????


Ray said to tell you hello and everything is going to be ok! HUGS
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Post  mscherry42 Sun Aug 02, 2009 10:26 am

Georgi,
I had a false positive with Jadah. They told me they found scar tissue on one side of her heart. I was so freaked out. But I opted not to get the amnio though. When they did more tests, they said, "Oh, sorry, the scar tissue was on the opposite side of the heart that means down syndrome. Baby is fine!" I went weeks of agony and worry, and really they were just dumb. My point is, You know that you'll love your baby no matter what. So, pray, give the worry to God, and just rest in the thought that everything will be fine. Big hugs to you, sweetie. And just know that I know what you're going through.
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Post  dolly's momma Mon Aug 03, 2009 12:31 pm

Because of my age I had very high risk factors for downs syndrome and several other things. I did get an amnio, and I am glad I did. Just for the peace of mind. We spoke with a genetisist, and he made us very nervous about several things. Anyways Kirk told him no, abortion was not an option, it didn't matter if we had a baby with downs, so we didn't need the test. I, however, said I wanted the test and we did it. Totally shocked Kirk at the time. I don't do well with the unknown. If I know what is happening I am fine with it, even if it isn't good. I told him if we had a downs baby I wanted to be prepared and ready for it going into the delivery room. I didn't want a big shock of facing that type of disability at the moment of my baby's birth.

I don't think the amnio risks are that high any more. I think you are quoting the risk factors from that cvs test, which we were going to do first, but Lucy was in the exact wrong position for it so they waited for the amnio. But don't take my word for it, I will try to help you check it those statistics. They used ultrasound to guide the needle when they did mine. If you decide to you are going to do it, just relax and get the test done. In three days you will have your answers. It doesn't hurt at all, I felt nothing. If you decide not to have the test, then that is the right decision for you. Just relax then too.
HUGS

Take a look at this link I found. It lays out information pretty clearly, maybe it will help you decide what the best choice is for you.
:amnio decision info page
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Post  Georgi Tue Aug 04, 2009 6:37 am

I have just had quite an in-depth chat with a midwife about what's gunna happen next and I asked her again what the miscarriage risk rate is when having an amniocentesis and she quoted 1:100 - 1:150 I have seen 1:100 (1%) quoted many times on websites etc..so I think this must be a true reflection of the risk rate however that is MEGA low, lets look at it the other way around 99:100 chance of NOT having a miscarriage!!

But my risk of micarrying through having an amniocentesis is actually greater than my risk of having a DS baby, a 1:120 risk is roughly 0.8% risk which again is very low.

I have decided NOT to opt for the amniocentesis, I am more scared of losing a perfectly healthy baby than having a baby with DS, we will have the 21 week scan as planned and at the same appointment they will carry out a more detailed scan to look for soft markers, there are 6 that indicate your baby 'could' have DS, however soft markers are often found on perfectly healthy babies so finding one or two soft markers is not a MAJOR concern (depending on where they are).
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Post  Georgi Tue Aug 04, 2009 6:39 am

Ginny wrote:Georgi, I was thinking you had odd results with Theo too cuz they didn't know for sure when you O'd..is that a possibility this time????


Ray said to tell you hello and everything is going to be ok! HUGS

My results with Theo were as we recall 1:375, my dates this time are out by 4 days so this could have made a difference to the results! According to the day I ovulated (which is 100% correct) I am 16.1 wks pregnant but according to my scan 16.5 wks, I have since discovered that it's very common for babies to show as being a few days ahead or behind if you have a dating scan after 10 weeks, therefore I am thinking perhaps I should change my due date back to JANUARY 18TH!!! this could have made a HUGE difference to my results!! The midwife did write down my dates in-correctly by 1 day so overall a total of 5 days out!!
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Post  Ginny Tue Aug 04, 2009 7:52 am

Well that is wonderful news Georgi! I am glad that you are feeling better about the results and that you are not going for the amnio, since that is what you want. I would support you no matter what your decision and am always here for you if you need me!!! I thoguht you had some bogus results also with Theo!! And yes, that is so wild that your due date is Thane's birthday (the original due date Wink )! I cannot wait to see your results on whether its a boy or girl for you here pretty soon! When is your 21 week u/s? 4.5 weeks??? So exciting!! Love you!!! Kiss
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Post  Lily*Blossom Tue Aug 04, 2009 11:48 am

Georgi, if I were in your situation, I would have come to the same decision. I think you are right, your dates are a bit off which can totally confuse the results of the screening test. I share your belief that the chances of a down's syndrome baby are less than your chance of miscarriage if you have amnio, and also that if I were to have a downs syndrome baby, I would love it anyways.

You sound like you have a wonderful grip on the situation and a loving supportive husband.

xxxxxxxxxxxxx
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Post  dolly's momma Tue Aug 04, 2009 1:44 pm

It's all good. I am glad you spoke to the midwife and are more at peace with your decisions now. Isn't it funny how just a few days can make such a difference with results. Just want to be here for you.
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Post  Helen Tue Aug 04, 2009 5:01 pm

Aww sweetie ... I'm so sorry to read this Cry Big, big hugs to you hun xx
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