Wont do Amnio...anyone else refuse it ? worried but not ?

Tara - posted on 06/24/2011 ( 8 moms have responded )

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Hi
well, im 18-20 weeks along (2 differen due dates) i had the blood test done, and it came baack positive...and the ultrasound said baby was normal....and I refused the amnio...i didnt like the added risk to the pregnacy...and i dont know i would do anything different...such as terminate the pregancy or even set up adoption...i really dont think i could...So i wont know until the baby is born if he/she has DS...
And i have a 14 month old son..who is a handful...
I am worried, but i know i will love my new baby, i already do... thats all that matters, right ?
Anyone else who refused the amni ? am i being stupid about not finding out ? any advice on DS and DS with other childern ? how did ur partners feel about it?

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Heidi - posted on 06/24/2011

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Ok. I too tested at an increased risk for DS and another more potentially life threatening defect at around 16 weeks. We refused at that point to have an amnio as it wouldn't change our decision first of all, secondly, Lydia was showing no other signs of any type of defect, and third, I took 800 mg of progesterone (which made me feel AWFUL) for 6 weeks to ensure I didn't miscarry. A 1 in 500 chance of miscarriage because of an amnio was too high a risk for us. Because of the elevated levels in the blood test, we opted for more frequent ultrasounds. Each of these had tiny anomalies, but never showed anything out of normal range. Until the one at around 24 weeks. That one showed a heart defect and because of that we were strongly urged to have the amnio, not because of termination options (which it was too late for anyway) but to allow for the very best preparation for Lydia's birth. We did have it and found out that yes, she did have DS.
I don't think you are being stupid for refusing. I know plenty of other moms who never knew until their babies were born. In our case, i am glad that I knew ahead of time simply because there IS a grieving process that everyone goes through and I was blessed enough to get that out of the way before she was here, so that when she arrived all I had to focus on was my beautiful baby. However, everyone is different. If you can't make it through the next few months without becoming a basket case of worry, have the amnio. I won't lie and say that its fun or easy or something that I EVER want to go through again, but making yourself sick with worry for the next 20 weeks just isn't worth it. Our doctor told us that it can be done at any time...up until 32 weeks.
If you choose not to do that (and I could hardly blame you) educate yourself about what DS means. There are a whole lot of misconceptions out there and old archaic ideas. Read blogs of other moms, talk to other moms with kids with DS, try to reach a place where you are comfortable. I can tell you without a doubt that I had my doubts about how well our family would deal with a child with special needs before she was here...We have a 13 yr old, and a 6 yr old who is very much a handful. Lydia has changed our family. So much for the better.
So many times we hear the words Down's Syndrome and our hearts sink with sadness and we imagine a life filled with limited capabilities. Let me tell you as someone who knows firsthand, that couldn't be further from the truth. Sometimes these precious beings come with extra issues (heart defects, gastrointestinal issues, low muscle tone, learning disabilities, etc.) but they are essentially filled with infinite possibilities, just like every other child. It may (or may not) take them a little longer to do the things other kids do, but they WILL do them. And it's so much sweeter when they do because you just KNOW how hard they had to work to do them, where other babies seem to do them with hardly any effort. Its scary. But oh, so worth it!!!! :)
You can feel free to check out MY blog (which also has links to some of my favorites too!) @ myliddybug.blogspot.com and if you facebook, you can add me there as well. Hope that I helped.....

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Sophia - posted on 04/27/2013

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yes I did... for many reason one being why ... do they wait so long 18/20 weeks.. that's a person for me.. one that moves, pees, cry and I made up my mind whatever god gave me was mine. I was going to be 40years old. He need PT,OT, and speech. doing well in school reading better than most of his peers. I cant tell you how happy he makes me.

Tara - posted on 09/07/2011

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Thanks everyone :) Me and my fience have gone thru the tears and confusion the "what if, should we, why" type of thing and now we're just excited for the fact we're going to have another little one for my son to grow up with !
7 months and counting !!! ♥

Kourtney - posted on 08/26/2011

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I have a 2 and a half year old daughter Heidi who was born with Down Syndrome. At my 18 week ultrasound, we were told that her limb measurements were atyoical, so we were sent for a level II ultrasound and blood test for DS. The level II ultrasound showed normal limb measurements, but a fairly severe heart defect, a heart defect where half of the people that are born with it are also born with DS. We also refused the amnio. The risk factor of miscarriage that they told us was about 1 in 200, but that was too high in our book. It makes no difference during the delivery whether or not baby has DS, and to tell you the truth, once Heidi's heart was fixed after birth, she has been just like any other kid, just doing things a little later than the so called "normal" kids do.

I'm now 19 weeks pregnant for my second baby. We have finished our screening blood tests, but do not have results yet. We have a level II and a fetal echo next week to make sure baby's heart is okay, but we are refusing the amnio again, no matter the results from the blood tests or level II. After having a baby with DS, I've found that the old cliche is trus... It really doesn't matter as long as baby is happy and healthy.

You'll love your baby no matter what, and may have an even more special relationship with him if he ends up being a "special" baby. Good luck!!!

Kimberly - posted on 08/18/2011

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Definitely not being stupid for not taking the amnio! I have a 10 yr old son and a 7 yr old daughter that don't have DS! I then have a 4 yr old son with DS! I was 36 when I delivered him so during my preg they scheduled me for two ultrasounds specifically looking for signs of DS! Both showed no signs of DS! I too refused the amnio based on the fact that I wouldn't do anything different if it came back positive for DS! The blood test is often wrong for various reasons and I am sure you were told! Our son with DS is the best thing that ever happened to us! Truly so much fun and full of love! ♥

Kari - posted on 08/17/2011

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I would pass on it..just prepare yourself for the possibilty of having a DS baby..if it turns out that the baby is DS then you are prepared more than if you hadnt known at all (like myself) DS kids are just like other kids but with their own little issues that are very managable...for the first year she / he will just like any other newborn after that is when all the OT PT and ST comes in to play..I wish all the best for you and your family it will all work out..:) if u have any questions please feel free to contact any of us on here..:)

Rachel - posted on 08/13/2011

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I am 19 weeks pregnant with my second child. My blood test showed an increased risk, 5%.. they told me this high of a risk is comparable to a 44 year old woman- I am 24. I did the ultrasound which showed no signs of DS and refused the amnio. Regardless of what the future ultrasounds show (going for another next week and then fetal echo cardiogram at 24 weeks) I will refuse it. Instead I'm going to prepare myself as best I can in case she does have DS. I would rather be mentally and emotionally ready for a child with DS and be wrong than take the chance of losing her, no matter how small the chance, just to know for sure. I understand why people choose to have it done, but I just know for me.. if I had it and lost her I couldn't live with myself. It won't change whether your child has DS or not, only whether you know ahead of time. So I say just learn as much as you can, talk to moms of kids with DS, read about it.. and allow yourself to take in the possibility so you can grieve (whether you actually need to or not) before baby comes.

Candace - posted on 06/24/2011

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I don't have a child with Down's syndrome but this post popped up to the side. With my first baby, I tested for an increased risk for Down's syndrome too. I was 26 years old with that pregnancy. I don't remember the exact numbers but for an average 26 year old, the chance of having a baby with DS was 1/5000 or something and the blood work showed the chances being 1/200, still a minimal risk but much greater than another 26 year old. Like you, the ultrasound was normal. We knew that the amnio was available, but honestly, didn't even really consider it. We knew that the result would not change our minds in terms of altering the course of the pregnancy. We knew there was a chance and that's what we took it as. Our son was born without DS. I did do some research on resources and what not before he was born so that I would be somewhat prepared if he was born with DS. With the amnio, I think you have to take into account the risk to the baby, which I know is low, and what the result will mean to you.

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