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Old Sep 19th, 2013, 14:51 PM   11
stacoma
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my child with DS


Hi
I understand your worry and fear as we found out 6 years ago our son would have Down syndrome. If I could go back in time and tell the person I was how wrong I was and it is NOT like anything I feared and grieved over - I would in a heartbeat. There are challenges just like with every other child and yes he does things at his own slower pace. But the unbelievable joy we have found in this little boy who we thought would ruin our lives is profound. In our 6 year journey I have met and talked with 100s of parents who have children with DS (some who knew before birth and some who didn't) and we all have one thing in common - amazing gratitude for the child we were given. I don't know one parent who would choose not to have their kid in their lives.



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Old Sep 19th, 2013, 14:59 PM   12
liveandlove04
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Just remember that until those babies are born NOTHING is certain. I've heard so many horror stories like yours, and then the baby comes out perfectly healthy. I'm sure your babies are just fine and your measurements sound great!

Keep your head up momma.
Having a child with Down syndrome is NOT NOT NOT a horror story. I am so saddened by the ignorance here...
Sorry if you took it that way but I'm almost 100% sure that she didn't mean having a ds child is a horror story. I think she is referring to having to know so early on and stressing and worrying about your child while your still pregnant. I did not take the test because I don't want to have to worry about my baby to the point where I had a difficult pregnancy.



 
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Old Sep 19th, 2013, 15:11 PM   13
LaraSue
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You're right, it's not a horror story, but it's also not a healthy baby that we all hope for. I work with children and adults with disabilities, incouding Downs, and i know they are awesome, caring, and friendly people, but they have struggles that those of us without Downs can't comprehend. There is nothing wrong with hoping your child is born healthy.



 
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Old Sep 19th, 2013, 15:50 PM   14
RN1
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STACOMA I second that!!! I wouldn't change my life for the world! My beautiful daughter is 4 years old and has down syndrome. I did not take test and did not want to know because I was ready to be a mom regardless of her diagnosis. I worry about her the way my friends and family worry about their children without a diagnosis.

BCINLA, enjoy your pregnancy and focus on what you can control which is your reaction to what ever life hands you. Best of luck!



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Old Sep 19th, 2013, 15:55 PM   15
RN1
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I am hoping someone might have some reassuring words. I am 13 weeks pregnant with twins and just got results from my first trimester screening with 1/59 odds of having a downs syndrome baby. I am 41 which probably factors into the statistics. The nuchal fold screening seemed good...baby A's measurement was 1.3 and baby B's measurement was 1.4 (both well below the 3.0 threshold). I am wondering if anyone else had stats like this and went on to have a healthy baby? I did do a harmony test but will not get those results for a few days and I am totally worried. Thanks in advance.

STACOMA I second that!!! I wouldn't change my life for the world! My beautiful daughter is 4 years old and has down syndrome. I did not take test and did not want to know because I was ready to be a mom regardless of her diagnosis. I worry about her the way my friends and family worry about their children without a diagnosis.

BCINLA, enjoy your pregnancy and focus on what you can control which is your reaction to what ever life hands you. Best of luck!



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Old Sep 19th, 2013, 16:34 PM   16
JessPape
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Originally Posted by sjwebb View Post
Just remember that until those babies are born NOTHING is certain. I've heard so many horror stories like yours, and then the baby comes out perfectly healthy. I'm sure your babies are just fine and your measurements sound great!

Keep your head up momma.
Having a child with Down syndrome is NOT NOT NOT a horror story. I am so saddened by the ignorance here...
I don't think that is what she meant, so how about you stop assuming and putting words in peoples mouths..



 
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Old Sep 19th, 2013, 16:42 PM   17
LucyLake
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I'm sure she didn't mean the word horror literally either. However, since 95% of Downs babies are aborted in the U.S. quest for the "perfect baby," I think Stacoma was more than correct in posting her thoughts on her beautiful son.

We opted out of genetic testing as a result of the false positives with twins and fact that it wouldn't change anything anyway.



 
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Old Sep 19th, 2013, 16:56 PM   18
sjwebb
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Originally Posted by stacoma View Post
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Originally Posted by sjwebb View Post
Just remember that until those babies are born NOTHING is certain. I've heard so many horror stories like yours, and then the baby comes out perfectly healthy. I'm sure your babies are just fine and your measurements sound great!

Keep your head up momma.
Having a child with Down syndrome is NOT NOT NOT a horror story. I am so saddened by the ignorance here...
Ignorance? Maybe you should ask what I meant before you starting spouting YOUR ignorance. A special needs child is not a horror story, jesus christ. What I meant was that the medical community likes to scare women into thinking their child has a high risk of downs, when they actually don't. I have a special needs child, thank you very much and maybe you should learn to respect others because you start jumping the gun.

Thanks Jesspape, and Liveandlove for trying to help me out.



 
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Old Sep 19th, 2013, 19:44 PM   19
liveandlove04
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Originally Posted by sjwebb View Post
Quote:
Originally Posted by stacoma View Post
Quote:
Originally Posted by sjwebb View Post
Just remember that until those babies are born NOTHING is certain. I've heard so many horror stories like yours, and then the baby comes out perfectly healthy. I'm sure your babies are just fine and your measurements sound great!

Keep your head up momma.
Having a child with Down syndrome is NOT NOT NOT a horror story. I am so saddened by the ignorance here...
Ignorance? Maybe you should ask what I meant before you starting spouting YOUR ignorance. A special needs child is not a horror story, jesus christ. What I meant was that the medical community likes to scare women into thinking their child has a high risk of downs, when they actually don't. I have a special needs child, thank you very much and maybe you should learn to respect others because you start jumping the gun.

Thanks Jesspape, and Liveandlove for trying to help me out.

Your welcome babe .



 
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Old Sep 19th, 2013, 20:24 PM   20
WantsALittle1
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I agree that the NT/first tri testing procedure, rife with weird medical jargon, grave looks on doctor/nurse's faces, words like 'abnormal' 'worrisome' and 'high risk' being thrown at a new mother pretty much embodies a horror story and I agree that the person who posted those words did not mean to offend anyone. We were given a high DS risk factor and I was scared to death. Not of my child, precious and loved to the ends of the universe, but simply of the unknown... sjwebb was just trying to be supportive in echoing what is a very common feeling about the whole process, which is conducted imperfectly and with all kinds of hubub by the medical community. It has nothing to do with the value of a life, whether that life has an extra copy of chromosome 21 or not. All life is precious, all life is worthy and beautiful and perfect, and we all know that

OP: I agree that age is probably a huge part of that risk factor, and if you can get MaterniT21 I'd recommend it. It really put our mind at ease to do the blood test and avoid the risks of an amnio, as having a child with DS wouldn't have changed a thing for us.

Which of your babies had the 1/59? I ask because those NT measurements sound really good. My son had a 2.3mm fold, low papp-A, and high hCG, which led to our higher risk factor.



 
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