UPDATED***Support Needed - Unfavorable Results from 1st Trimester Screening***

[Calmegja2]

Just remember, it's a screening at this point.

A screening is not a diagnosis, and the bar is set low to catch everything and everyone.

I wish I could reassure you, but right now I know worrying is just going to be at the top of your list.

And your DH is correct. 3% is such a small percentage, really, such a slight chance...try, as much as you can, to focus on that.

(((HUGS)))

[amp]

I'm so sorry you're feeling so sad and overwelmed. As others said, it's just a screening, not a test that says you are going to have a baby with Downs. It just says your liklihood increased. I will pray that you aren't part of that statistic. And even if you are, I know it's devastating and hard to believe right now, but you will love that baby just the way he or she is. Hugs!

[stella]

Oh Mama! That is a 97% chance of NOT having a baby with downs.
Think about it that way - 97% chance that your baby is just fine.
Please try not to worry.

[Karenn]

That happened to me too, only my odds were 1 : 7. Colin is now a perfectly average 3 year old. False positives are so very common in those early screens. If you do a search for "triple screen" or "afp" in the lounge you might find the posts from a ton of us who have been through the same thing. Hang in there! The wait for amnio results was really hard. After I got the results from the amnio I finally started sharing with people about how scared I was. It was then that so many of my friends and acquaintances shared that they'd been through the exact same thing and they all had healthy pre-schoolers to show for it. I wish I'd shared with more people during the wait for results from the amnio. I think it would have given me a lot more peace.

I'm sorry you have to go through this. It really is no fun at all!

(edited for spelling.)

[bcky2]

i know it is hard to think of it this way but ther chance of your baby being fine is so much better then of having downs syndrome. big (((hugs))) and hang in there. they told my sister that her second ds was going to have downs syndrome based on her test results, she opted out of the amnio and she had a healthy boy that does not have downs syndrome. so they are not always right.

[Marisa6826]

Kathy-

First. Deep breath. Second, bloodwork is notoriously inaccurate - ESPECIALLY screenings. If you had any bleeding in the first trimester, you are pretty likely to have false positives. I have a friend that was told she had all kinds of things wrong, went for amnios, etc. It turns out they were all wrong. Her daughter is completely healthy. Have they done a nuchal translucency test? I don't know how far along you are, but it's generally done before 14w, which is where you sound as though you are (based on the delay for the amnio).

I KNOW how hard it is when you're told that there's something wrong. I've been there.

But until you have something more definitive, try and not let your mind go crazy. Do yourself and try to stay away from all the scary, random stuff online. I know it's nearly impossible, but you're just going to freak yourself out - hopefully without need to.

Please keep us posted.

Big HUGS

-m

[annasmom]

I know this is hard, but PLEASE do not be so dismayed. Two years ago my sister also received really bad results (1:10), and she too was devestated. She now has a beautiful, very intelligent and very precocious two year old dd. It is just a screening!


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[trumansmom]

(((Hugs)))

Stella is right. That's 97% chance everything is okay. Those are pretty darned good odds.

Of course, I know that doesn't help at the moment. We'll be sending all kinds of good thoughts your way while you wait. What kind of bloodwork did you have done? Was it the quad-screen? If so, unless things have changes in the past couple of years, it is notorious for giving false positives.

((((Hugs))))
Jeanne
Mom to Truman 11/01 and Eleanor 4/04
Independent Consultant, Do-Re-Me & You!

[chiqanita]

Oh Kathy, I'm sorry you're feeling down right now. I'll say a prayer for your little one at the end of this.

If you don't mind I would like to share a personal experience with you and a couple of family/friend experiences with you. I'd rather PM you so I'm going to do that straight away.

Hang in there!

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[SweetTooth]

Kathy,
I'm sorry you're going through this. Like PPs have said, it is a screening & the purpose of it is to be sensitive & to refer on for further testing that will give more definitive answers. I know women who have had false positives as well. Hang in there & try not to worry. I know that's easier said than done. Sending good thoughts your way....

[momto2boys]

First, I would like to thank everyone for sharing their stories, kind words and prayers with me. This is truly a wonderful community.

I spoke with the head nurse at my OB's office because I can finally talk about this without bursting into tears. She pulled my chart and reviewed the geneticist's report with me. The big positive is that he noted the nuchal translucency measured at 2.1mm and that there were no other abnormalities observed. It's not much but I'm hoping it will get me through until the amnio on the 26th. She also told me that there is still a fairly significant margin of error with the Ultrascreen test.

I needed something since I've been unable to eat or sleep since receiving the risk assessment last Thursday. She read me the riot act about not eating so I made sure to have a well-balanced dinner tonight. Also, she offered to call in a prescription for Ambien to help with the sleep issue but I don't think I will take it. My 2-year old DS fractured his leg Saturday morning and hasn't been sleeping well so I'm afraid I wouldn't wake up when he needed me.

Again, thank you all for kindness,
Kathy

************************************************** *****************************************
I received the results of my 1st trimester bloodwork this morning. The genetic counselor lowered my odds from a 1:128 to a 1:36 chance of having a baby with Downs Syndrome. She told me these are the odds of a 43-year old versus my 38. I am absolutely devastated! I wish I could rationalize these results like my DH. His exact words were "this is why I hate statistics. But it is still only a 3% chance of having a baby with Downs." I wish I could be so optimistic.

I have an amnio scheduled for January 26. They won't do it before I'm 16 weeks and I'm too late for CVS.

My heart is broken. All I can do is cry. My 4-year old asks me why my face is red. I'm thankful that he's young enough to accept my answer of 'my eyes hurt'. My 2-year old looks at me with concern and simply wipes the tears from face.

Thanks for listening,
Kathy

[JFC]

I think all the PPs said it well, but I wanted to send you HUGS as well. I know it can be hard to focus on the positive, rather than the scary unknown possibilities, so just do your best. (((HUGS!!!)))

[momto2boys]

I had the Nuchal Translucency Ultrasound with the bloodwork screen. The nuchal fold measured at .21 cm. They are concerned when it measures above .25 cm. So, it was the proteins they measure in the bloodwork that changed the odds.

Thanks for the words of encouragement from everyone,

Kathy

[crayonblue]

Like others have said, there is a 97% chance of no Downs Syndrome! I know it is much easier to focus on the 3%. A friend of mine was told all the way up until she delivered that the baby she was carrying had Downs. Well, she delivered a perfectly healthy little boy. We can all give you stories of inaccurate test results.

I hope and pray that you are given reassuring news on January 26th.

[Momof3Labs]

I'm sorry that you got this seemingly bad news! Here are some links that may help you:

http://pregnancy.about.com/cs/afp/a/afptesting.htm

http://health.yahoo.com/ency/healthwise/aa21828/_aa21828-medinfo

Keep in mind that the rate of false positives is much higher as you age!!

My midwife had told me that if the AFP came back as a positive screen, she would send me to a specialist who would then help us decide if an amnio even made sense (since there are risks involved with those, too). So, if you are comfortable with the amnio (and the person doing it), then that may be the correct next step for you. But there are other possible next steps that you may prefer!

[zuzu]

I'm sorry you're going through this.

I'm sure you know this, but those screenings are so often incorrect, and produce so many false positives. I can't remember what my numbers were, but we got news that there was a moderately elevated risk that DD had Trisomy 18. My first mistake was researching the disorder online. I forced myself to stop when site after site had me in tears. We decided on an amnio because we wanted to know what we might be facing, and I know the waiting for that was very difficult. We were thrilled to learn that everything checked out okay, and I hope you receive the same good news after the 26th!

Big hugs. We're here if you need us.

Melissa, mom to Sarah (5/03)

[KCR4]

My sympathy for your concern and hope for the best outcome. My sons are 4.5 yrs and 2 yrs, and I'm having the nuchal fold sonogram (and bloodwork) next week, when I'll be 12.5 weeks gestation. We are planning to bring our older son to the sonogram. He is really excited and interested in all this; he gets out his child encyclopedia about once a week and opens it to the fetal development page. But I have worried about him being exposed to my sadness if there are any red flags found at the sonogram. Your story strikes a chord in me. I'll be 34 at time of delivery and was hoping to get "good odds" at this sono, and not have amnio. I hope to hear a follow up with good news from you; hang in there. I'll be thinking of you.
Karen

[overcome]

Kathy
The same thing happened to me(1:18). I opted for an amnio for piece of mind. If I was having a baby with downs, I certainly wanted to know ahead of time so I could prepare. The amnio indicted no downs! My DD was born in Oct and is perfectly fine.

I also worried about having an amnio, but it took 30 seconds and was painless. We also confirmed the sex, which was a nice perk for me.

I felt the same way you did at first. I went online and could not believe how mnay ppl were in the same situation and went on to have "normal" babies. The odds are DEFINITELY in your favor.

When you get the amnio you may want to inquire as to if they can do the FISH test which gives you preliminary results in a couple days since the full work up amnio results can take a couple weeks.

One last note...after the results came back and the drama was over I started wondering why my numbers were off. My OB said it *could be* an indicator of my placenta function so I had an ultrasound once a month to monitor it. It was great that I got to see my DD every month! We found out her growth was right on target, the placenta had good blood flow and was operating well.

Keep us posted...I suspect you will be responding with the same news I received!

Ashley

[missym]

Kathy, I am sorry you are going through this stress! Please try to concentrate on the 97% chance that your baby is healthy. Sending a big cyber-hug...

Missy, mom to Gwen 03/03 and Rebecca 09/05

[tina-t]

As the other PP have said, this is just a screening test and in no way gives you the definite diagnosis of Down's. It still is stressful to think of the "what if's". Think of the 97% chance of having a normal baby though and focus on that. Hopefully, that will get you through until you get the results from your amnio.

(((Hugs)))

[Hippoharbor]

I am praying for you and your family. Hang in there.


Michelle

[JElaineB]

I hope you are able to hang in there until the amnio and the results come back. I'll be thinking about you! {{hugs}}

Jennifer
mom to Jacob 9/27/02

[TaChapm]

(((HUGS MAMA))) Please try not to worry! Listen to you DH on this one.

You are in my thoughts!

Tara
Mommy to Jackson 11-10-02
Tyler William 6-9-05

http://b4.lilypie.com/p1eI0/.png[/img][/url]

http://lilypie.com/baby1/060609/3/0/1/-6/.png

[TaChapm]

Sorry! Double Post!
Tara
Mommy to Jackson 11-10-02
Tyler William 6-9-05

http://b4.lilypie.com/p1eI0/.png[/img][/url]

http://lilypie.com/baby1/060609/3/0/1/-6/.png

[calebsmama03]

From what I understand, the nuchal fold test is far more accurate than the blood work, and you said those results were normal, correct? Try not to worry honey! 97% probability that your baby is fine seems like pretty good odds to me. Hugs sweetie!!!
Lynne
Mommy to C 3/03
http://www.gynosaur.com/assets/ribbons/ribbon_emerald_18m.gif[/img][/url]
And Miss Purple, 5/05

[juliasmom05]

(((((Hugs))))

I know it's easier said than done, but please try not to worry. As everyone has said, it is just a screening test. It is not diagnostic by any means. My thoughts are with you.

Marci

Mom to Julia 4/05

[ribbit1019]

I am so sorry you have this extra stress Kathy! Try as hard you can to focus on the postive, 97% is a pretty big #!
Hugs mama and I hope you get great news in a few weeks!

Christy
Maddy born 6/09/04
http://lilypie.com/baby2/040609/3/4/0/-5/.png

Little Man due 3/02/06
http://bd.lilypie.com/cKLom4/.png
Co-Owner Ribbit Baby

"I did then what I knew how to do. When you know better, you do better." ~ Maya Angelou

[mommy_someday]

Oh, Kathy! It's so much easier to worry than not, isn't it? When DS was born, his blood sugar was slightly low and they did a ton of heel sticks on him in the hospital. They ran some thyroid tests on him and the initial tests said that he had problems. We had to have them redone several times after he came home to find out that he was, in fact, perfectly fine. To add insult to injury, no one at the hospital bothered to tell me that these particular tests often have a false positive. I remember when the hospital called me at home (DS was maybe 4 days old) to tell me he probably had a thyroid issue, I just sat in my bed, holding DS to my chest and bawling my head off. All I'm trying to say is, odds are your sweet baby is going to be just fine, like mine was (not that Downs Syndrome and thyroid problems are equally devastating). I know it's hard not to worry. Please hang in there and know that I'm thinking of you. Lots of mamas here understand what you're going through. (((hugs)))

[searchdog]

(((((((((HUGS))))))))

I just wanted to say that I had almost an opposite incident. I was told at my 20week ultrasound that my DD might have Trisomy 18 based on the fact that she had what they called cysts in her brain. It was devastating for me. I started crying immediatly. I then went and picked up the paperwork from my OB to get the triple screen test done and it came back normal. We then had to wait until I was 26 or 28 (I can't remember) weeks to go back for another ultrasound to see if the cysts were gone. I basically couldn't really talk about my pregnancy for that whole waiting period because I was still so scared.

Well she is now 19 months old and I just kissed her goodnight as she headed up stairs with DH she was yelling Bye to me.

[ohiomom]

Wishing you peace and hope.

I've always been too scared to get triple/quad screen done at my age for fear of false positives -- I've always gone straight to either CVS or amnio. Hang in there. The nuchal results are encouraging.

Nicole's Mom 7/03
Joshua ^|^ 5/05

[shishamo]

Kathy,

Same thing happened to me (1:25) after nuchal translucency test. I too was too late for CVS so I had to wait for my Amnio at 15.5 weeks. My DD is now an absolutely perfect 15 months old girl.

Please try to focus on the fact that this is just a screening, and nothing is def. until you get your culture results from the Amnio (which is about 7-10 days after the procudure). It is easier said than done, I know. I remember crying and crying in front of my older two also ...

[shishamo]

Kathy,

Same thing happened to me (1:25) after nuchal translucency test. I too was too late for CVS so I had to wait for my Amnio at 15.5 weeks. My DD is now an absolutely perfect 15 months old girl.

Please try to focus on the fact that this is just a screening, and nothing is def. until you get your culture results from the Amnio (which is about 7-10 days after the procudure). It is easier said than done, I know. I remember crying and crying in front of my older two also ...

[mommyj_2]

Hugs to you.
I'll be sending positive energy your way and hoping for the best.

[mommyj_2]

Hugs to you.
I'll be sending positive energy your way and hoping for the best.

[Melanie]

I'm sorry you have this stress on you now. I hope everything will be proven to be well with your baby.

The test has a tremendous amount of false-positives. Can they give you an ultrasound to look for markers of Down's Syndrome instead/earlier?

[Melanie]

I'm sorry you have this stress on you now. I hope everything will be proven to be well with your baby.

The test has a tremendous amount of false-positives. Can they give you an ultrasound to look for markers of Down's Syndrome instead/earlier?

[jesseandgrace]

OK, I am realizing that I've had a few tough years because I keep saying "oh, that happened to me..". Well, this is another thing that happened to me. When I was pregnant with dd I had this same thing happen. I was DEVASTATED because by the time the AFP results came back I was 20 weeks so I was showing, I knew it was a girl and we wanted a girl, the list went on and on... I researched this obsessively, and basically this is what I would say. THE TEST IS IRRESPONSIBLE, RIDICULOUS, AND HIGHLY INACCURATE, AND FURTHERMORE THIS TEST WOULD NOT BE TOLLERATED IN THE MEDICAL COMMUNITY IF IT WERE FOR MEN. The genetic counselor told me that basically the state does not want to pay the expense for a child with downs, this crappy test is the least invasive thing they can make most women take, and they hope that women with a positive result will go for the ammnio and find out for sure, and then abort if the baby has downs. So, because there is no better test, almost all the people with these results will have a baby without downs, but they give these ridiculous results. The problem is that it is hard to convince yourself that you won't be the one who has the baby with downs. I didn't take the amnio, I stuck with the results of the targeted ultrasound, and there were no soft markers there. I wish I had done the amnio because I worried the entire pregnancy and it would have been better not to. If I am ever pregnant again, I will do the CVS test right away. I am just so sorry for you, I cried constantly, it was awful. It is also a difficult test to understand, so my experiece was that my midwife had no idea what the results meant, and needlessly scared me. She said something about a 5% false positive, and that is ridiculous. From what I can tell that # is the # of people with a baby with downs that were not caught in this umbrella test, not the percentage of people who will have a baby with downs. The test casts a huge net that catches 95% of babies with downs, but the # of people in the test also caught who will not have a baby with downs has got to be higher than 99%. I hope I explained that right, but in a nut shell virtually all the people in your situation will have a baby without downs, but some people with a baby with downs will have normal AFP results. I know there are no words to help here until you are able to get the ammnio. but just do everything you can to be calm and wait it out, I know, easy to say and hard to do. If you need to talk to someone feel free to e-mail me. My friend is going through the same thing, she is 13 weeks and they are doing the CVS now, so she must have been just under the cutoff.

[jayali]

Kathy,

It sounds like you feel a little better after getting the Nuchal Translucency (sp?) results. I hope so.

I was 41 when I had my son. I had a miscarriage at 40 and genetic testing showed the baby was Downs. So we were extremely concerned the second time I got pregnant. I spoke to my doctor about screening and she (an older Mom also) said "Don't bother, because of your age you will come back with a higher statistic and all it will do is worry you." I am so glad I listened to her because every one of my AMA (advanced maternal age!) friends who opted for screening had the same results as you. Each one had a great pregnancy and a great baby. Unfortunately it is just one of those things us older mommas need to torture ourselves with!!!

My love and prayers are with you. Even though you have had great support from all of the pp I know how stressful these next few weeks can be. Good luck!

[emmaandgeorge]

In a 38 year old, the blood work is not as reliable as the nuchal fold itself. If your nuchal fold was within normal limits, likely everything is ok. With my first child, I participated in the Faster Study, where they were testing the nuchal fold for use in the US. My blood work came back abnormal, putting me at a 1:35 chance of downs. They were not "allowed" to tell me that my nuchal fold test was normal and that would lower my risk. I had the amnio, and my daughter is a healthy 4 year old.

I hope it all works out. I know it is difficult to go through this kind of stress, and my prayers are with you.

Betsy

[Marisa6826]

Kathy-

I'm glad that you got some better news. Seriously, those screenings are notoriously inaccurate.

The Ambien may make you a little loopy, but you can definitely take Benadryl. I would take a half of one at night when I couldn't sleep. Enough to make you relax, but not enough to make you wake up on the kitchen floor. ;)

I've taken Ambien off and on since Mia's birth. FWIW, you DO hear the crying - you just might not care enough to actually get up. ;)

Sorry to hear about your little Guy's leg.

Please keep us posted!!

big hugs and sweet dreams

-m

[barbarhow]

Kathy-I missed this last week so am getting to it late. I am so sorry that you have had such a difficult time lately. That is so much to deal with. I am glad that the news that you got today was better and I hope that you can use this to get you through until the 26th.
I have to agree with Marisa-I take an occasional Ambien as well. If your DH is home with you maybe you could let him know he needs to be on alert and then if your little one needs you either he could get up or wake you up. I just take a half of one which is 5 mg-that is enough to help me to sleep when I need it and also not so much to knock me out cold. I am still able to hear Anna and able to get up and take care of her.
Please keep us posted after your testing. My thoughts are with you and your family.
Barbara-mom to Jack 3/27/03, a Red Sox fan
and Anna 5/12/05, my little Yankee fan!

[jesseandgrace]

Kathy,

I'm glad you have good news, I remember being in the exact same spot as you are and I know it is tough! I don't know if this will make you feel better or not, but I know if I wanted a baby at 43 (the age they said your odds were, right?), those odds would not scare me off at all - I wouldn't think twice about them. It sucks to be given higher than age normal odds by that crappy test, but at least for me I would have gotten pregnant with those odds if those were my odds, they are really very low. Hang in there, try to take care of yourself during the wait.