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Expecting baby with Down's

Does anyone have any resources for women expecting babies positive for Downs? The amniocentesis test came back positive and we're trying to prepare ourselves for what's to come.

Re: Expecting baby with Down's

  • Join a local support group. Start intervention early with fine motor help, speech, etc
  • Hi @Hsner11. I'm also expecting a baby with T21 and am almost 30 weeks. I joined Down Syndrome Pregnancy on Babycenter, which has been wonderful. I would highly recommend going there. They have a list of resources to read.

    I also joined my local Down Syndrome group. I have already met a few moms and they will match you with people in similar situations.

    It's hard because we don't yet have babies to cuddle and make it a reality. Meeting other families makes it so much more normal for me.

    I hope your baby is healthy! Please message me if you want to chat more and check out the Babycenter forum.
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  • Join a local support group. Start intervention early with fine motor help, speech, etc
    I have a 9.5 month old with down syndrome.  I also recommend contacting a support group near you.  I contacted my local group the day after I got my positive MaterniT21 test at 13 weeks and it was great to be able to talk with other moms who understood not only the medical and educational aspects but also the emotional.  Speaking with other moms also helped to formulate questions for the pediatrician.

    I contacted our local school district to set up early intervention shortly after ds's birth. The first few months after he was born he wasn't any different than any other newborn.

    The Babycenter groups do have a lot of information. To me they're harder to follow than the bump so I don't hang out there very much.

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  • Thank you! All your advice is so helpful and very much appreciated
  • Downsyn.com is an excellent resource with a lot of support.
  • Look up New Directions Down syndrome Association. I'm 21 weeks and our little boy has DS too. There are a lot of resources out there, but contacting a local or regional support group is a great way to start. ND sent me a packet with TONS of information about what to expect. Hang in there! It gets easier and easier to understand and prepare. :)
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  • I'm most likely going to have a baby with downs after speaking with genetic counselor yesterday. Still deciding if amniocentesis is the next step for us or not since we're keeping her no matter what. Would you mind sharing how you decided to have procedure performed versus not?
  • I decided to have an amnio after diagnosis of a major heart defect at 23 weeks. We did not expect any chromosomal defects but decided to have the procedure done just to know for sure. It was a huge surprise when it came back with an extra chromosome. I'm very glad I did it to know since we didn't have any suspicions before. We did the amnio over less invasive procedures so we could rule out all possibilities.

    It was never a matter of termination for me. It was to have all information on the table and be as prepared as possible.
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