Anyone had an amnio? - Mothering Forums

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Old 04-02-2007, 11:57 AM - Thread Starter
 
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Okay... I am miss- non-invasive and suddenly due to the stupid AFP/Triple Screen test I am faced with whether or not to have an amnio for a Down's risk. I am so sorry I had the stupid screen as there are huge false positives with the test.
I would like to ignore the increased risk that it came up with but I am hoping for a homebirth and both DH and I are nervous about a homebirth if the baby could have Down's. There are so many congenital issues (particularly heart and GI) associated with Down's that I really would want to be in a hospital.

Anyone ever had one done? I am really stressed about this as I so *DON'T* want to turn this birth into a medical event.
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Old 04-02-2007, 12:50 PM
 
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KarenMT - Yeah, that was the exact reason I refused the triple screen. Before you agree to amnio (which has its own risks) I'd ask myself (in a discussion with your partner) what would you do with the info? I also think you need to find yourself a homebirth midwife (if you don't already have one)and talk to her about what she recommends for you.
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Old 04-02-2007, 02:23 PM - Thread Starter
 
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Thanks- dctexan - I think the main thing we would do with the information is plan for aftercare. I'll be moving closer to my family but DH's job involves a lot of travel and with a toddler it would even be crazier if baby was in the NICU. I am still in the process of finding a homebirth midwife as we are moving across country some time in June. I do agree though that this test is very poor.
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Old 04-02-2007, 02:47 PM
 
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Ah. Tough situation. Hopefully, someone with more experience and knowledge will weigh in with some good advice for you.
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Old 04-02-2007, 02:57 PM
 
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I just wanted to give you some support. I'm sorry for the stress this is probably adding to your lives!

My best friend AND my brother/SIL both had positive triple screens resulting in amnios that showed everything was fine. Personally, I wouldn't do either test, but I TOTALLY understand the position you're in...

I hope someone is able to give you some good advice from their personal experience!

Jodi -full time working wife to a SAH Papa; mama to my boys Breck (12/04), David (09/07), and Elliot (01/10); always remembering our loss, Jordyn Justine (09/06)

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Old 04-02-2007, 03:32 PM
 
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I was about to go into do the AFP test and now after speaking to a midwife she talked me out it.
The risk of a miscarriage with amnio is twice that of actually having a baby with Down's. So I'm not going to do any of it.

I know 2 women that have done the Amnio. Everything turned out fine and one of my friends said that she would do it again in a heartbeat. This is from someone who would have had an abortion if the baby was Down's.

If you know that you are definitely not going to have an abortion then don't do the amnio.

Laura~ wife to my stuntman, Stig, mama to Gavin Rutgar reading.gif(4) and now Wyatt Andreas (1) and 2 little angel1.gif.

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Old 04-02-2007, 03:33 PM - Thread Starter
 
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Thanks for your support. I just made an appointment with the perinatal center and what we will do is meet with a genetic counselor first and do a family history, then a level 2 u/s to look for any biophysical markers of Down's. Based on this we will see what are risk factors are and make a decision. If the u/s comes back perfectly clean I will probably opt-out of the amnio. I repeatedly hear stories of people with positive screens and completely fine results.
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Old 04-02-2007, 03:48 PM
 
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Just wanted to share a hug..

I was pretty sure I'd have to have an amnio, since my nephew has a rare genetic disease.. I did fortunately get clearance, that I wasn't a candidate...

I'm sorry you are in this prediciment... Best wishes.. I do think you are making a good choice, in regards to your level 2 results, and meeting w/ the genetic counselor, before any final decision.
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Old 04-02-2007, 03:58 PM
 
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I do not want the AFP test (but am currently scheduled for next week). It is being recommended with a genetic ultrasound (which I may also skip) instead of an amnio. Would this be a possibilty for you? They could look for markers that indicate Down's Syndrome in addition to looking for any heart or gi issues that would be an issue at birth. (This is why I may do the ultrasound w/o the AFP, I hate the idea of false negatives that cause so much stress.)

You don’t owe them an explanation, just a response.
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Old 04-02-2007, 04:21 PM - Thread Starter
 
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mommajb- I think this is th kind of u/s they will probably do. I just assumed it was a genetic u/s. The genetic counselor is scheduled to call me this week and I will inform her that I don't just want a de facto amnio with an u/s just to pinpoint fetus and placenta location. I believe they can also check for heart or gi issues as well. I will know more once I speak with them. I hope they are understanding.
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Old 04-02-2007, 11:21 PM
 
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I had an amnio with my son. I was more scared then anything. It was a little sting but overall didn't hurt to bad. Just plan to have some one there for your support.

I have a special needs soon with a genetic brain disorder. But they don't know what gene its in so an amnio won't tell me anything this time. I didn't know that last time.

Wishing you the best!
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Old 04-02-2007, 11:30 PM
 
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Im not on any birth board but I saw this and wanted to respond. I had the triple screen years ago with my dd and it was postive for downs. I actually went in for a 2d ulrasound. They asked if I wanted to do an amnio too but I declined. I was able to find out alot from the ultrasound(granted it wasnt 100%) but it gave me some peace of mind.
Good Luck to you..
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Old 04-03-2007, 04:36 AM
 
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Just wanted to say that I think your plan sounds really good. I would also be VERY hesitant to do an amnio (and also skipped the AFP/Triple Screen) given the risks involved. I had a Level 2 u/s with my 1st DS and believe that's a great method to check for telltale signs of problems. Hope all will turn out just fine!

(I've actually never known of a mama with a "positive" Triple Screen to have a positive on the amnio!)

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Old 04-03-2007, 10:39 AM
 
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Quote:
Originally Posted by k9sarchik View Post
The risk of a miscarriage with amnio is twice that of actually having a baby with Down's.
Not in your DDC, but I just wanted to point out that this is not quite correct; it depends on your age.

The risk of amnio causing a miscarriage is around 1:300. If you are 33 or younger, the risk of chromosomal abnormalities (including Down syndrome, trisomy 13 and 18, and other abnormalities) is less than or equal to that risk.

By age 35, the risk of chromosomal abnormality rises to 1:213. That's why the standard recommendation is to suggest amnio to women 35 and older.

As you get older, the risk of chromosomal abnormalities rises significantly. At my age (I'll be 42 on my due date) the risk of chromosomal abnormalities is 1:39. As you see, this is much higher than the risk of the amnio.
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Old 04-03-2007, 03:46 PM
 
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I have no good advice...and I don't know what I would do. But it seems like you are being quite level headed and brave in this situation. I pray you have peace no matter what tests you take or don't take.
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Old 04-03-2007, 05:28 PM - Thread Starter
 
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gracious- thank you so much for your kind words. I really am looking forward to my appointment next week to meet with the genetic counselor/perinatiologist. DH and I have prayed a lot and we both feel that we will only go with an amnio only if all the evidence points to it being the right choice.
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Old 04-03-2007, 06:18 PM
 
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I think the level 2 ultrasound instead of/ before an amnio is a good idea... if your main concern is heart/ GI defects to see if you should rule out homebirth, then the ultrasound should pick that up, right?
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Old 04-03-2007, 11:52 PM
 
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I had the same situation with dd. I had the triple screen, came back with an increased risk of downs (maybe 1:100?). I went to the genetic counselor, (didn't learn much) and then I had the level II ultrasound with a very, very experienced DR. I would recommend getting the best DR possible. He saw no signs at all, everything was exactly on target, and so they drop your initial risk in half if I remember correctly, so I was about a 1:200. However, he told me that in his opinion the ultrasound was a much better indicator than the triple sreen test. Based on the results, we opted to not have the amnio. We would have if the results were different, so that we could prepare in advance. I'm not in your due date club, but found this thread because I am seriously considering an amnio this time around just to know for sure because I don't want to go through the triple screen, worrying, etc.
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Old 04-04-2007, 12:31 AM
 
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I did the AFP with ds1 and it came back with an extremely high risk of Down Syndrome. We opted for the ultrasound which showed ds had no soft markers and no visible defects. That was all the information we needed. We felt that since we wouldn't terminate a pregnancy for Down Syndrome we would not risk miscarriage with an amnio.

The AFP caused me so much needless anxiety. It is my biggest regret about that pregnancy. I have refused it for both pregnancies since.

The false positives are said to occur mainly because of dating the pregnancy incorrectly. I knew exactly when I ovulated so I was sure of my dates. That convinced me that the AFP was right. It wasn't.

The prospect of having a child with Down Syndrome means envisioning a different life for yourself and your child. It is a difficult thing to live with uncertainty about. My thoughts are with you in your process of information gathering.
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Old 04-04-2007, 11:24 AM - Thread Starter
 
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THank you so much for sharing and understanding my position. I am "very" sure of my dates as well (since I'd been trying for 10 mths plus charting) and had an 8 week u/s which confirmed the date within 2 days so that is why I get a bit nervous. My risk still seems a but low. I missed the call from the genetic counselor yesterday so I will have to call her back today. I'm hoping to get some reassurance from her on exactly what they will do and make it clear that the amnio is not something I definitely want.
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Old 04-04-2007, 11:33 AM - Thread Starter
 
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Thanks Mom2JandG - have you considered the nuchal translucency test? I know this isn't definitive like the amnio but is far more accurate at spotting Down's. I should have done it but was so sick with m/s that I declined.
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Old 04-04-2007, 05:50 PM
 
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Yes, I am going to do that I think. I was sure about my dates too, I don't think that is the main reason for the false positive, I think the main reason is that the test is designed to include mostly false positives. This is a really stupid analogy, but here goes. Let's say that most blue fish swim by the left side of a coral reef, but so do millions of other fish, but the blue fish really like it there. You want to catch a blue fish, so you cast an enormous net capturing all of the fish by the left side of the coral reef. Sure, you caught some blue fish, but also many, many (mostly) other colors. This is what this test does. Most (and I do mean most) women in this situation will have babies without downs, but it is the most uninvasive way to make people test for downs, so they are willing to put us all in this risk group to catch the tiny amount of women who have a baby with downs in hopes that the women will terminate (most do) and the baby will not be a burden on the state. Horrible, but true. If you get a number of 1:100 and you are called high risk, that risk is 1%, 99% not. Good luck, I remember the stress of this, I am hoping you get some good news.
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