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Old 08-26-2006, 10:31 PM - Thread Starter
 
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Hello- I'm hoping that someone else out there has had this happen...

My midwife called me this week to tell me the triple screen blood test came back positive for at risk for Downs Syndrome. I have a one in twenty chance of the baby being normal. Of course I've been pretty nervous, crying etc...

I have a level two sono for Monday and they will then discuss the need for an amnio.

Wow-this is going o be a long weekend....has anyone else opted fopr this test with a positive on the screen?:
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Old 08-26-2006, 10:36 PM
 
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I'll keep you in my thoughts. I had a triple screen and felt pretty anxious until I got the results. Hang in there!

FWIW - People with Down's have full and happy lives. They can go to school, learn to live independently (or near independently) and work. I'm sure there is a Tribe or other forum where you can learn more about Downs.

Best wishes.
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Old 08-26-2006, 10:40 PM
 
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Well, I didn't opt for the screening, but I did just have the 20 wk fetal survey sono & can tell you some of what they'll be looking for. Our u/s tech was great about descibing what she was checking & why.

Anyway, some signs of Downs they'll look for are a 2 vessel instead of a 3 vessel umbilical cord which is the norm, the lack of a particular nasal bone which would normally be present, and the fact that the hands open and close and that the fingers don't constantly overlap. Apparently in Downs children it's very common for them to hardly ever open & close their hands in utero.
I'm sure there were a few other things as well, but they're not coming to mind right now.

Sorry you're having to go through this. Please keep us informed of how everything goes. Hopefully some mamas who've been through the positive triple marker screening before will post with more helpful information!

Oh, and if you get Mothering magazine check your back issues. I remember an article in just the last year or so written by a Mom whose second child has Downs. It was a really great article & her daughter was adorable!

Holly
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Old 08-26-2006, 11:21 PM
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You can come on over to the Special Needs forum under Parenting for lots of hugs and support. My DS (who has autism) went to preschool with some kids w/Downs, and they were incredible boys...very social, affectionate darlings. I hope you get some answers w/the u/s. You're in my prayers.

"Isn't life a series of images that change as they repeat themselves?" - Andy Warhol
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Old 08-26-2006, 11:31 PM
 
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Hugs to you momma, hang in there! I had a + test too and was crying and feeling horrible after I found that out. Remember though the odds are in your favor of having a perfectly normal baby! Lots of times there are false positives. I too had the US done and fetal echo done too and they looked normal, my baby was born normal. I wished that they had never done the triple screen (I didn't even ask for it either!). It caused me so much worry for nothing. I will keep you in my prayers!
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Old 08-27-2006, 12:33 AM
 
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I declined the triple screen for this reason. I've heard of several women getting positives, and they all had normal babies. I hope everything goes well with your u/s!

Happily parenting our snuggly wild child since 2007 and her little brother since 2011!

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Old 08-27-2006, 12:39 AM
 
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I had it with both pg. and my results were fine. But both times the Dr. AND Nurses emphasized that "false positives" are very likely and that if I got a positive result, to not stress until they could do the follow-up test. Easier said than done - I'm hoping for the best for you and your little one.
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Old 08-27-2006, 12:46 AM
 
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false positives are pretty common w/the triple screen. mama.
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Old 08-27-2006, 12:56 AM
 
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Hiya;

I am sorry to hear you are worrying.

I wanted to tell you that your test couldn't have come back with a figure of a 1/20 chance your baby will be 'normal', as the test gives you a risk of having a baby with Down Syndrome, not the other way around. So, your test has come back with a 1/20 chance your baby has Down Syndrom, and a 19/20 chance your baby doesn't, or a 95% chance that your baby doesn't. The triple screen (also called MSS) has a high false positive rate, and has a sensitivity of abour 70-80% (meaning it only picks up that percentage of babies with DS). It is a lousy test.

Only an amnio can tell you if your baby has a genetic disability, and even then is only 99.9% accurate (cells sampled can be maternal, or the the baby could have a mosaic form of a genetic disability and the cells sampled may not have the genetic disability in them). The current published rates of miscarriage associated with amnios is 1/100 or 1/200.

With these tests you have to decide if you would terminate the pregnancy because of a genetic disability. Otherwise, statistically, there is no benefit to knowing ahead of time. The kind of surgeries that infants with DS may need are not emergent, and many women report being depressed and anxious the whole pregnancy. There is a lot of research out there that supports this. Of course, there will always be someone for whom the advance warning of a problem is helpful to the baby, but statistically these are infrequent.And finding out for almost certain, by amnio, has such a huge risk.

However, if you would terminate, you'd need to know fast ... you are approaching the limit of termination in most places by 20 weeks.

You mentioned that there may be a 'need' for an amnio. It's not a need -- it's totally up to you to decide if you want it.

I hope you can come to some peace about what you want to do in going forward, Mama.

(Just curious, did you ask for the test, was it offered or recommended? I see so many women coming from physicians and other midwives that have done the test without having anyone walk them through their options in the decision, to test or not test, and what each decision may mean. They may not have even really consented to what the test actually was and could mean, it was just 'routine'. I mean, if women want it, they are responsible for the information that can come out of it, but if they didn't really know what it was, what a burden that information can be. I see you struggling with the outcome of this test, and I am just hoping you had *wanted* the test done and understood the whole thing well. Still a difficult thing in either case, and I am sorry for the worry it is causing you, Mama.)

Carolynn


"My midwife called me this week to tell me the triple screen blood test came back positive for at risk for Downs Syndrome. I have a one in twenty chance of the baby being normal"
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Old 08-27-2006, 12:58 AM
 
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I, too, had a "positive" on the triple screen and a baby with the normal number of chromosomes. I wish the docs did better education with women on this. It sounds so scary, but it should simply be viewed as a screening test. What you have tested positive for is having some stuff in your blood that makes it seem reasonable to give you additional testing. The odds are still overwhelming (as they are in any pregnancy) that your baby is healthy. I feel like it is misleading to even call them "false positives." They aren't false -- they are true. A chunk of the women who may benefit from extra testing are correctly identified. Anyway...off my soapbox.

I opted for a Levl II ultrasound, but it showed no problems and I declined the amnio. I always believed my son was fine and I actually worried most of all that the moment of birth would be ruined because I would be looking at him to see if it seemed that he had signs of Down Syndrome. The miraculous thing about birth is that I didn't care a bit. He was here and he was alive and he was my baby.

I don't know if you are a person of faith, but it helped me to focus on the fact that my baby was who he was and he was the baby I was intended to have. I actually read a book called "Choosing Naia" about a family who decided after finding out during an amnio that their baby did have Down Sundrome to carry to term and raise her.

I am hoping for good news for you.
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Old 08-27-2006, 09:05 AM
 
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I never have the test done because no matter the outcome I would never terminate. And also because of the high rate of false positives.

That being said, when I had my 20 wk ultrasound with ds last year they told me that he had subchorionic cysts and an increased nuchal fold. Indicators of down's and Trisomy 18...

He is now a healthy 8 month old!! I know it can be really hard not to worry when you are in the moment. But looking back I can honestly say that the best thing to do is try not to worry until you have a real cause to do so.

I will be thinking of you!
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Old 08-27-2006, 10:25 AM
 
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hang in there, jai mata. i wish the tests could be more accurate!!
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Old 08-27-2006, 09:35 PM
 
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not from your ddc but i was just reading my Trying Again After Loss book and they go over in great detail about all the tests in there...and it said:

out of twenty women who receive a "positive" afp screening result only one is carrying a baby with down's.

hoping your u/s will give you peace of mind!

Happy mama to my four girls S 8.15.02 , L 04.25.06 (gone at 36 weeks ) and L 3.10.07.And another rainbow! Baby C has arrived 10.26.10!
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Old 08-27-2006, 10:34 PM
 
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Naomi, mama to Faith (12/03) and Hannah (12/06) and Kai, a homebirth.jpg waterbirth.jpg on 5/15/10
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Old 08-28-2006, 10:03 AM
 
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I actually had an increased risk of Downs based on my nuchal translucency test which is a MUCH more accurate test...but still doesn't TELL you yes or no. I understand how you are feeling, but as PP poster mentioned, you still have a WAY better chance of having a healthy baby than a Downs one. I did opt for the amnio, and now know that everything is fine. I am sure yours is too!
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Old 08-28-2006, 10:39 AM
 
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Just wanted to encourage you that your odds of having a baby with Downs Syndrome are low but that even if your baby does, he or she can still be healthy and have Down's syndrome.

I think the amnio would be a mistake because of the increased risk of miscarriage. Enjoy your ultrasound and seeing your precious baby in your womb today. : Your baby is so precious and a part of you no matter what. Hugs to you momma.

Trying to build up my house, not tear it down namaste.gif.   Got 3 wonderful kids jumpers.gif  ribboncesarean.gif autismribbon.gif, blessed with a wonderful husband luxlove.gif and have the privilege of staying home full time to enjoy it all! 

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Old 08-28-2006, 12:33 PM - Thread Starter
 
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Hi all...overwhelmed with your loving encouragement and words, I am on my way today for the sono...

I opted for the screen. My midwives were very honest with me and did not push this test. I guess when it was "negative" with my son that I thought it would be a nice "piece of mind" to repeat that scenario...surprise!

I will carry your words with me. Thank-you for reminding me to enjoy seeing my baby. I could have easily lost sight of that gift. I'll let you know.


Jai Mata (which means glory/praise to the mother)
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Old 08-28-2006, 06:51 PM
 
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Thinking and praying you are well...let us know when you are ready.

Trying to build up my house, not tear it down namaste.gif.   Got 3 wonderful kids jumpers.gif  ribboncesarean.gif autismribbon.gif, blessed with a wonderful husband luxlove.gif and have the privilege of staying home full time to enjoy it all! 

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Old 08-28-2006, 09:42 PM
 
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Hi Mama,
I just wanted to let you know my thoughts and prayers will be with you.

Kellie
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Old 08-29-2006, 12:34 AM
 
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Hugs to you! I hope the u/s was able to allay some of your fears and worries. The PP's have told you all about the "false" positive rates for the triple screen, so I won't get into that. But I want you to know that my cousin Jim is a 21 year old with Downs, and his presence in our family and in our community is akin to that of a true angel. He is truly the person who most brings our family together, despite his struggles. He graduated high school last year and is waiting for an opening in a group home and starting chef school this fall (not to be an actual chef, but more of a chef's assistant). He is functionally literate, can take care of his own personal needs (laundry, hygiene, food prep), and is about the greatest conversationalist our small town has ever known. He cannot go anywhere without running into friends.

Sorry to ramble, but I can't help sharing his story whenever I come across people wrestling with Down's Syndrome in their possible future. I love my buddy Jim! :
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