NIPT results- update- trigger warning

cmac827 · August 2017

I'm due with #2 in March and have yet to introduce myself there and miss this group. With that being said I just got my NIPT results back and it came back positive for Trisomy 21. I'm not sure it would be appreciated if my first post in that group would be asking this question. I don't remember if anyone in this group had a positive result, but if you did, what was the outcome? My midwife wouldn't answer many questions on how accurate it was and said it's something the maternal fetal medicine specialist and genetic counselor would discuss with me. She said it might be awhile before I get into them and I'm very anxious. I've been a mess since finding out. On a positive note, it's another girl.

Tawny87 · August 2017

Congrats on another baby girl! From what I hear there can be a lot of false positives. I know several of the ladies in june '16 tested positive but only Viking girls baby girl had it. I watched my sister in law go through a pregnancy riddled with fear about genetic disorders and saw how stressed and alone she felt. I will keep you all in my prayers and June '16 is always here for you!

AmberLiz99 · August 2017

cmac827 said:

I'm due with #2 in March and have yet to introduce myself there and miss this group. With that being said I just got my NIPT results back and it came back positive for Trisomy 21. I'm not sure it would be appreciated if my first post in that group would be asking this question. I don't remember if anyone in this group had a positive result, but if you did, what was the outcome? My midwife wouldn't answer many questions on how accurate it was and said it's something the maternal fetal medicine specialist and genetic counselor would discuss with me. She said it might be awhile before I get into them and I'm very anxious. I've been a mess since finding out. On a positive note, it's another girl.

I have never tested positive, but as I remember the first test is usually a screning to see if further testing is recommended. I know it's hard, and I hope you can get to talk to a specialist soon.

And congradulatuons on having a girl. Big hugs!

vintagevix2016 · August 2017

Congratulations on another baby girl!! I wish I had the knowledge or experience to provide some comfort but big hugs to you and wishing you and your family all the best. We're here for you!!

artlea2013 · August 2017

Unfortunately, I have no experience to share, and it's easy for me to say "Chin up!" over here when it's not happening to me, but you just have to remember that there is nothing to be done now but wait. You know you will love your baby girl with all your heart, diagnosis or none in the end, which it sounds like might be none if false positives are really that prevalent. You're doing everything you can, and if your midwife didn't have much to say, it can only mean that there isn't much that they even know right now. Distractions are good and try to keep an open mind and heart.

vintagevix2016 · August 2017

art+lea2013 said:

Unfortunately, I have no experience to share, and it's easy for me to say "Chin up!" over here when it's not happening to me, but you just have to remember that there is nothing to be done now but wait. You know you will love your baby girl with all your heart, diagnosis or none in the end, which it sounds like might be none if false positives are really that prevalent. You're doing everything you can, and if your midwife didn't have much to say, it can only mean that there isn't much that they even know right now. Distractions are good and try to keep an open mind and heart.

Can I just say, "Ditto!" here, very well put @art+lea2013.

meggyme · August 2017

Congrats on another girl! I agree with @AmberLiz99 I remember it being a probability of having certain genetic diseases/anomalies. They then go to more testing including amniocentesis if it's positive. Until you have a definitive answer do your best to distract yourself.

lm45678 · August 2017

Congratulations on your baby girl!! I can only imagine how stressful this time is for you and your husband. I didn't test positive for Trisomy 21 but I did test positive for a lot of genetic things (tay sachs among them) and remember how difficult and stressful that part of my pregnancy was. As everyone else said, June 16 is always here for you as you go through this. Try to keep focusing on your toddler who I'm sure has you very busy as a distraction!

I'd also just like to add that no matter the outcome and your decision, I'm confident that you will be met her with love and support and not judgement.

cmac827 · August 2017

Thank you ladies. I'm thankful to have my toddler as a distraction. She's a busy one. I did speak with a genetic counselor who did say the test I have is 90% accurate. We will be having an amnio to confirm. The waiting game just sucks.

splsmama2016 · August 2017

We did have one mama who's little girl ended up being born with Ds. She is a BEAUTIFUL little girl, met a few early milestones much sooner than non-Ds babies, and has quite the following on FB. That being said, it can be a false positive. If it's something that you want to pursue further, look into an amnio, or another test (CVS?) that can help give you more definitive answers.

Keep in mind that there are so many support groups for disabilities, including Ds, that if it comes back that LO will have a disability you are not alone and can learn SO much before she gets here. @VikingGirl12's DD has been such a blessing for so many of us, as we've learned so much from them.

cmac827 · August 2017

We have an appointment on Friday with the maternal fetal medicine specialist and genetic counselor. They're doing an ultrasound during the appointment.

cmac827 · August 2017

We met with the genetic specialist and maternal fetal medicine specialist. We were setup to do a CVS. They did an ultrasound before the CVS and there wasn't a heartbeat. I had a D&C done yesterday. We're absolutely devastated and heartbroken.

AmberLiz99 · August 2017

@cmac827 I'm more sorry than I can say. I know there's nothing we can do to make this better, but know that my thoughts and prayers are with you.

Go at your own speed as you recover, and make sure to get the support you need. I'm so, so deeply sorry.

Tawny87 · August 2017

cmac827 said:

We met with the genetic specialist and maternal fetal medicine specialist. We were setup to do a CVS. They did an ultrasound before the CVS and there wasn't a heartbeat. I had a D&C done yesterday. We're absolutely devastated and heartbroken.

Stuck:
I'm so sorry to hear that! Please make sure you take time to grieve and heal yourself. I will definitely be keeping you in my thoughts and prayers.

lm45678 · August 2017

cmac827 said:

We met with the genetic specialist and maternal fetal medicine specialist. We were setup to do a CVS. They did an ultrasound before the CVS and there wasn't a heartbeat. I had a D&C done yesterday. We're absolutely devastated and heartbroken.

Oh @cmac827 I am so incredibly sorry for your loss. I can't imagine how difficult this is for you. My thoughts and prayers are with you and your family during this time.

laurendiaz02 · August 2017

@cmac827 I'm so sorry for your loss

meggyme · August 2017

@cmac827 I am so so sorry to hear that.

vintagevix2016 · August 2017

@cmac827 I'm so sorry! Sending all my love to you and your family.

annaf2011 · August 2017

@cmac827 I'm so sorry for you loss. Thinking of you as you take time to grieve.

splsmama2016 · August 2017

@cmac827 I am so sorry, mama. Thoughts and prayers with you and your family during this time of sadness.

artlea2013 · August 2017

@cmac827 oh no, this is terrible news. I hope you don't suffer much physically and you are able to take the time you need to recover mentally and emotionally. We're here for you

adiaz132003 · August 2017

I'm so sorry! I pray you feel better soon and please take your time to grieve and heal. We are here if you need us and we would understand if you need space and time. *Internet hugs*

egirl1025 · August 2017

@cmac827 so sorry to hear this! You and your family will be in my thoughts.

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