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Discussion Starter · #1 ·
SO... in the normally backwards way of my area, I got a call from a prenatal specialist (or something like that...the name is cut off on my caller ID) They wanted to schedule an appointment because I was reccomended from my doctor. what??? for???? She said that I would have to get that information from my doctor but that she wanted to schedule my appointment now anyways. wtf?? I told her that no I wasnt interested in scheduling an appointment until someone had the courtesy in mind to tell me what it was for. Apparently she was on a mission to get her appt book filled up or something because she was very persistent about getting the appt scheduled and also about not telling me what it was for.<br><br>
So at this point I'm freaking out 10 ways to sunday. It must be urgent and horrible right? I mean if she wants to set the appt RIGHT NOW and REFUSES to discuss what its for. Eventually I just told her that I would call when and if I chose to schedule an appointment, and I hung up.<br><br>
So a nurse calls me from my midwife/ob office and just tells me to calm down about 50 times. I ask her whats going on and she rambles letters at me (the name of the test) and tells me that I should go see the doctor they want to send me to. After 5 minutes of me repeatedly asking what test, what does it mean, etc she kinda panicks and has me hold for my midwife. (this woman is a godsend btw... she is a light in a sea of medical darkness) The midwife gets on and explains to me that my risk is 600 and something because I'm 30? and that the test bumps that risk up to 190ish? of having a downs syndrome baby and kind of explains everything to me (although I've already freaked out because of how things were handled up until this point)<br><br>
Anyways, now that I've vented.... has anyone else had to deal with an abnormally low count on their downs syndrome blood test? What was it like for you? How was the outcome for you? I've never even considered this, really, being so focused on natural birth and home birth and all that. I'm not even sure where to begin.
 

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First, don't freak out <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hug.gif" style="border:0px solid;" title="hug"><br><br>
The number that she quoted probably means that you have a 1 in 190 chance of having a Down syndrome baby. That's still quite a small chance!!<br><br>
For comparison, my chance of having a Down syndrome baby (at age 42) is about 1 in 60. Even that number is not a very large chance.<br><br>
The mainstream advice for someone in your situation would be to do an amnio to determine for sure if your baby has a chromosomal abnormality. The amnio procedure has about a 1 in 300 risk of miscarriage.<br><br>
If you consider the amnio, I would suggest that you think about what you might do if the result is positive for Down syndrome. Most women choose to abort (about 90%, I have seen quoted). Other women use the information to start planning for how they will care for the new baby.<br><br>
Some women, who are confident that they would not want to abort anyway, simply decline the amnio. It is up to you.
 

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<div>Originally Posted by <strong>tamagotchi</strong> <a href="/community/forum/post/8140356"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">The amnio procedure has about a 1 in 300 risk of miscarriage.</div>
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While I agree with not freaking out, I'd just like to point out that newer research shows a much lower risk of miscarriage than previously thought, especially when the procedure is performed by an experienced person.<br><br>
My own personal experience was that I felt that I would be under enormous stress for the remainder of my pregnancy without that information (after being given a 1/72 chance) and I decided to have the amnio in order to find out for certain. Generally, they will provide conseling to explain all your further testing options and give you plenty of time to make a decision about what, if anything, you want to do.
 

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I agree, she is telling you that your risk factor for downs is 1/190 (so less than 1%). The risk for your age seems to be one in 600, so your AFP test indicated that you have a higher risk than your age, but the test probably means nothing at all. I had the same basic risk as you after my AFP with my dd (now 3). The midwife and her office were all panicky about my increased risk, even if looked at in the worst possible light, 99.5 % chance the baby doesn't have downs. It is just a RIDICULOUS test. After researching,I can boil it down to something like this - some (not all of downs syndrome babies will have something slighty different about their AFP test, but the huge, huge majority, nearly 100% of babies with this slighty different thing will not have downs.) The state wants people with downs to abort (as a public policy), but they can't make everyone take an invasive test like an amnio, so the best they have found is this really, really stupid blood test. Your risk is probably nothing, but now they will send you in for genetic counseling, talk about the risk, etc. It's hard not to worry, but really I am pregnant now with a risk much higher than the 1/190 they gave you, just due to my age. I certainly think it is a worthwhile risk. In all likelihood you don't even have this 1/190 risk and you are just one of the many, many (mostly) false positives, but even if that is your new risk, it is tiny. I chose to have a level II ultrasound, and when everything looked fine I didn't do the amnio. For me that was the right decision, but I'm not against amnio. I know a whole bunch of people who have had the same results on this test, and all of the babies do not have downs. The test can be confusing, because it also tests for spina bifida, and it is about 90% correct in diagnosing that, so people sometimes confuse that rate of success with the downs part, and think it is a good test. It isn't.
 

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I'm very sorry that this has happened to you. It doesn't help when people try to dance around answering your questions.<br><br>
In my pregnancies which progressed I had the Downs screening done. I did it because of my age and I have two cousins who have Downs.<br><br>
I whole heartedly agree with tamagotchi you have to decide on what you will do with the information.<br><br>
I had decided before I even got my results back that if my considered risk was high and I had an amnio would I abort it? The answer was no because it was still my baby after all. Then I asked myself what if I had a healthy normal baby and the amnio caused a miscarriage? I couldn't bear that thought so I decided no amnio at all.<br><br>
It is a personal choice and not necessarily an easy one to make.<br><br>
Good luck.
 

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Discussion Starter · #6 ·
My husband and I had a really long talk about this last night, and we're going to go have the lvl 2 ultrasound done. I really just guess I don't understand the weight of the test. It doesnt make sense to me that it tells me I have a higher risk and not a yes/no answer I guess. At what point would I know for certain? I almost did not get it done, because I knew it would cause unnecessary stress, but I figured my DH would want me to have it, so I did it (we had planned to UC but with full prenatal appts/screenings). Now I really wish I had opt'd out of it, because even if the risk is low, its hard not to worry.<br><br>
Does the lvl 2 U/S tell for sure if there is a problem?<br><br>
Does the amnio?
 

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One of my friends had a baby with downs at home with a midwife. That baby is the light of her life, and I see why, he is just adorable in every way and smiles and just so sweet. Truly, his smiles are magical.<br><br><br>
I am uncomfortable with the way that the medical community talks about downs as a "risk." When I was pregnant, I went and talked with parents of children with downs. After actually going to our local association for retarded citizens and talking with several parents, I decided that even if my baby had down , I would keep the baby because it appeared that the baby would be a delight and a blessing to our family.<br><br>
Here is one of my favorite links about down syndrome: "What would happen if people with DS ruled the world?" <a href="http://www.nads.org/pages_new/news/ruletheworld.html" target="_blank">http://www.nads.org/pages_new/news/ruletheworld.html</a><br><br><br>
Just based on my own experience interviewing those families, I would suggest that you might feel more comfortable with this if you learn more about down syndrome. Also ask about the termination procedure that is available, etc. If you do those things, you can figure out what you would do even if you had the information.<br><br>
I hope all goes well for you.
 

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Discussion Starter · #8 ·
I'm not saying I would abort if I knew. Really my biggest concern is that I would not be comfortable UCing a baby with complications and I understand that some of the common problems with DS babies are heart and digestive tract problems. Home birth midwives are not an option for me due to my VBAC status and OBs and hospitals are a big fear factor for me, because I don't trust a word that comes out of their mouth, generally speaking (due to past birth experiences). We have to plan our birth according to the needs of our baby, and if there is any sign of a heart defect, or other physical problem requiring immediate attention, then we have to start interviewing hospitals and putting together our birth strategy, which up till now has just been made up of which sheets and towels we want to ruin and what to fill the fridge with for labor.
 

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<div>Originally Posted by <strong>Jenlaana</strong> <a href="/community/forum/post/8145220"><img alt="View Post" class="inlineimg" src="/community/img/forum/go_quote.gif" style="border:0px solid;"></a></div>
<div style="font-style:italic;">At what point would I know for certain?<br><br>
Does the lvl 2 U/S tell for sure if there is a problem?<br><br>
Does the amnio?</div>
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The level 2 ultrasound won't tell you for sure if your baby has a chromosomal abnormality. It does help to rule out physical abnormalities (like heart defects).<br><br>
The amnio tests the chromosomes directly, so it does tell you for sure if your baby has a chromosomal abnormality. However, it doesn't tell you how affected your baby is (whether your baby has a heart defect, for example).<br><br>
I personally think the level 2 ultrasound is a good choice if you wouldn't plan to abort, and you want more information about the baby so that you can plan your birth and plan for proper care after the birth. If your baby appears normal on the ultrasound, you can go ahead and plan for a normal birth.<br><br>
But if you want a definitive answer for your own peace of mind about the situation, only the amnio will give you that answer.<br><br>
I'll add that I did the CVS procedure (similar to an amnio, except that it's done around 11 weeks) because my risk number was 1 in 60 and I did want the definitive answer, as early as possible. But many women are more comfortable with uncertainty than I am <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 
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