October 2023 Moms

Positive for High Risk Down Syndrome

Hi all,

My husband and I received the results of our sequential genetic testing this week and they came back as positive 1 in 6 for high risk of Down syndrome. I haven’t handled the news very well and am looking for anyone with similar stories or with DS babies for some encouragement.

I had a second blood test done this week (the Panorama) that is supposed to be more accurate. We should have the results back next week and be able to discuss next steps from there. The wait is excruciating.

Re: Positive for High Risk Down Syndrome

  • linh18linh18 member
    Hi! 

    Although I haven't been in your situation, I hope I can offer some encouragement. It must be hard hearing anything uncertain about your baby, especially if you aren't sure of the outcomes. 

    There are so many stories of parents of children with Down syndrome and the stories are unique like each person. If you have instagram there are a lot of encouraging stories and videos about people who have Down syndrome. (They pop up on my feed all the time, and are very sweet). Here is an article from a parent about some things they wish they knew when they first found out about their little one.

     https://www.parents.com/health/down-syndrome/raising-a-child-with-down-syndrome/

    Hopefully this parent's experience can be a realistic encouragement to you about what to expect if your baby does have Down Syndrome.

    You can also find support in your area by googling "support for parents of children with Down syndrome (+ your location)". There is so much support out there either virtually or in person to help you and your child thrive.  

    I really hope you get conclusive results from your test soon to give you the answers you need and help you prepare in whatever way you need to! 

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  • Update: we received our panorama results back today and they are normal and low risk. I will do my best to continue to make updates to this post if/when we have them. The last 6 days have been very tough just waiting and not knowing but reading of other people’s experiences seemed to bring some comfort that we weren’t the only ones. Praising the Lord for our results and praying for those walking through a similar situation. 
  • AmMcc12AmMcc12 member
    Those results have to be a relief! Thank you for the update!
    Me: 26     DH: 25
    DS1 -- 9/30/2016


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