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Down Syndrome


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#1 wendybirdy

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Posted 06 March 2014 - 08:54 PM

My husband and I recently found out that my son has ds and I'm 23 weeks along. Are there any support groups online for young parents like ourselves? Or any tips?

#2 Jules

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Posted 11 March 2014 - 09:22 PM

Well first congratulations on the pregnancy! And I'm sure you are very overwhelmed at this point I know I would be. How did you find out of you don't mind me asking. But to answer your question I think there is section for parents with kids with special needs. I'm pretty sure there was mother in original group hopefully she can help. Or be someone good to talk to. But were all here if you just need to talk.

#3 wendybirdy

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Posted 11 March 2014 - 10:34 PM

Thank you! Well we found out through the MaterniT21 test and an ultrasound found extra fluid in the ventricles of the brain. There are no physical indications via legs and arms and face. Just that screening test and the brain thing was how the doctors found out. And thanks again. It was a big hit to us but now we're at the point where we're a little more comfortable talking about it together without crying.

#4 Jules

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Posted 13 March 2014 - 01:13 PM

I'm sure it's very hard it's good to talk about it though and it will never be easy but will get easier you sound like strong person! Do you have family history therefore that's why u did the test or you just did the test just in case. I was always asked to do one with my kids bc I was considered high risk do to seizures but I could never do it just that alone to me makes u very strong. I also figured well if there's something wouldn't change if I'm going to have my child or not and didn't wanna take any risk and possibly case any negative side effects to the baby. There aren't big side effects from the test but they r there so I was scared basically. But im sure your glad u did it now you can slowly prepare as much as you can at least. Have you asked ur doc if he or she knows about any support groups mainly bc im sure he has patients or has had patients in similar situation.

#5 wendybirdy

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Posted 13 March 2014 - 03:55 PM

Well I am considered high risk because I'm technically considered overweight and I have hypothyroidism. No family history on either side.

#6 wendybirdy

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Posted 13 March 2014 - 04:19 PM

But anyways we didn't really want to take the test. We were pretty much cornered by this specialists assistant. But now I am kinda glad so we can plan ahead. I am going to my OB next month for my regular appointment and I'm gonna talk to her about any local groups we can get involved with.

#7 Jules

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Posted 14 March 2014 - 05:48 AM

Well that's kinda reason I didn't want the test bc no family history and the test offered to me had chance that it could effect baby in negative way so didn't want to chance it. But it's good to be prepared your right. Hopefully you find good group of people going through same thing.

#8 wendybirdy

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Posted 14 March 2014 - 05:54 AM

For me I just did a screening test, just the blood test mixed with ultrasounds. I opted out of doing the cvs/amnio. I didn't want to hurt him. We have upcoming appointments for more ultrasounds at Riley. That's where they're having me deliver. I'm nervous about everything. I just want my baby boy to be ok and get through everything fine when he's born.

#9 Jules

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Posted 14 March 2014 - 02:11 PM

@wendybirdy Yes that's the one I couldn't do either way to scary. Hope the next few appointments go well.

#10 wendybirdy

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Posted 14 March 2014 - 03:22 PM

Thank you!




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