I received bad news about my NIPT today

thatlauragirl · May 2016

My doctor just called and told me that my result was positive for Trisomy 21. I am still feeling vaguely like this is a dream and not really happening. She said it's 99% accurate but wants me to verify via amnio so the peri is supposed to call me today to set it up. From there I have to decide what to do and, honestly, I have no idea. I'm completely lost. It's a boy.

I think I'm clinging to the 1% now because it's all I've got. Has anybody else had a positive result?

I'm so sorry for being such a downer. I just needed to get it out.

m6agua · May 2016

I don't have any experience but just wanted to say I am so sorry.

sweetlyuntied · May 2016

I am so sorry for disappointing news. I have no experience but would maybe recommend reaching out to your genetic counselor about resources that might be helpful.

beforeyou · May 2016

I don't have experience either, just wanted to say I'm thinking about you and your so.

rspalding001 · May 2016

Im so sorry :-( wait and see what the amnio says. Im so sorry you are going through this right now. Big Hugs!

chloe97 · May 2016

I'm so sorry, @thatlauragirl I haven't gotten my results yet, but because I got a "no-results low fetal fraction" on my initial draw, my Dr did warn me that this could mean an increase risk of chromosomal abnormality, so I've been obsessively worrying about the possibility, but no answers yet.

Ive tried to lurk on other boards to see if there are places of support for women with positive NIPT tests on the Bump and haven't found anything specific. All I've been able to find are Baby Center communities.

Sending good thoughts your way!

GreenEyedUnicorn · May 2016

I have no advice, but whatever you decide, will be the right choice for your family. I'll be thinking of you. Hugs!!

yosemite2018 · May 2016

I'm so sorry. I hope the amnio gives you more answers.

mrs_hoyahoo · May 2016

So sorry you got this news. I'll be thinking of you and your little one - and hoping for good news from your amnio.

comealongponds · May 2016

I'm so sorry, @thatlauragirl. I'm not having NIPT done since we're expecting twins, just IPS screening (NT scan plus bloodwork) so I don't have any experience with receiving this kind of news. I will say, that as a paediatric nurse I've worked with plenty of T21 kids, and as scary as the diagnosis may be when you first hear it, it is by no means the end of the world. T21 does increase the risk of certain birth defects, and often T21 kids need a lot of therapy when they're small to help them reach their milestones.

While you consider next steps, I encourage you to reach out to local Down Syndrome support groups to help you process the news and learn about the process of raising a child with Down Syndrome in case the diagnosis is confirmed on further testing. Thinking of you.

eta: I realize after re-reading it might sound like I'm saying you have to continue with the pregnancy, which is not at all the case. If the diagnosis is confirmed and you and your family decide that it would be best to terminate, there are plenty of resources for you as well if that is your choice.

ShallowSeas · May 2016

T&P's your way. I'm so sorry you are going through this.

shevaCC · May 2016

I'm really sorry you got this tough news. Let yourself feel all the feelings and try to let go of any guilt since none of this is your fault. As PPs said, whatever decision you make is right for your family. If it's what you decide, there are lots of resources out there for Down Syndrome. Sending hugs, thoughts, and prayers your way.

Katemr1146 · May 2016

Thinking of you and your family. Hugs mama

sunbeam1 · May 2016

What a tough thing to deal with!!
sending you and your family lots of love.

msu_gal · May 2016

So sorry for this scary news. I'm currently waiting for my results so I can't share any personal experience. But hoping for a false alarm for you.

whitneyf1 · May 2016

I don't have any experience but I'm so sorry you're going through this!

Thewizardofrhythm · May 2016

@thatlauragirl I'm so sorry you received this news. I do not know anyone else who has received this news but I know plenty of people with children who have downs. I really feel for you. Once you are confirmed you can make your decision. Give yourself space to grieve and feel, reach out to groups for downs and also try to connect with women who have decided to terminate. Maybe your OB has resources for you. I'm sorry you are facing this, I really am. I have a sibling with severe developmental disability and had this test so that I could appropriately future plan for my family. I'm waiting on my results now. Good luck to you and lots of love.

mandabee77 · May 2016

I am so sorry you received this news. So many T&P for you.

Little+Tiny · May 2016

Thinking of you and your family. So sorry for the disappointing news.

doraleigh35 · May 2016

I'm sorry that you're going through this. I hope that you can get some answers from the amnio. Thinking of you of your family.

monkey41 · May 2016

Thinking of you and sorry for the hard news. I hope the amnio goes better than expected.

MollySm · May 2016

I'm sending you all my thoughts.

muybueno · May 2016

I'm sorry that you are going through this. Please keep us updated. We are rooting for you and that wonderful LO of yours.

Elev429 · May 2016

Thinking of you. Sending great vibes your way that the amnio goes well!

NordyMN89 · May 2016

You're in my T&Ps. Take time to process and don't be too hard on yourself. I hope the amnio goes well for you.

XmomX · May 2016

So sorry

your in my thoughts ❤️

DunkinDecaf · May 2016

Sending thoughts and prayers your way.

jrussell16 · May 2016

I'm so sorry to hear this. T&P your way.

jarethinafrock · May 2016

Wishing you all the best.

laurenlalap · May 2016

I'm so sorry you're going through this. We are all here for you though. So much love and support is being sent your way.

FiancB · May 2016

I'm so sorry. There is no wrong decision but I can definitely imagine being totally lost as to what decision to make. I hope you get unexpected good news with your amnio.

MrsDho11 · May 2016

Thinking of you. *hugs*

CherryPicked · May 2016

Thinking of you. I'm sorry this is not more reassuring, but my first daughter tested 99% positive on NIPT for T13 and she did have it. It is okay to grieve the loss of the child you imagined. Feel everything you need to feel. Sending hugs your way and hoping that your amnio brings better news.

leaseee · May 2016

I'm so sorry you are facing this. I will second @chloe97 's comment that Baby Center tends to be a better resource for the possibility of a poor prenatal diagnosis.

All decisions in these situations are so personal and only you can know what's right for you, but I will say that I tend to think getting more information (like from the amnio) is the best thing you can do right now. We will all be thinking of you and keep us updated.

dorkiness · May 2016

Thoughts and prayers with you and your family.

CecilTheBear · May 2016

I'm so sorry you received this news. I wish I had something helpful to say, but I don't. I can only imagine that it must be very confusing, shocking and scary. All my thoughts are with you.

Roxell · May 2016

I'm so sorry you're going through this. I'm sure whatever you decide will be what's best for you and your family .

aquasocks · May 2016

I'm so so sorry that you're going through this. We are here for you. I wish I could help you in some way. I'm thinking about you and your little one. Sending huge hugs.