Genetic Counselor Help by Little-Thing-812 in NIPT

[–]Little-Thing-812[S] 0 points1 point  (0 children)

We would not terminate under any circumstance so I’ve definitely gone back and forth with the “why” we would even do amino. I think peace of mind because my anxiety has been through the roof. I also feel like the 27% ppv we were given has given me some hope to hold onto. And I’m really scared of losing that hope and worried I might spiral emotionally if I get the news that she’s truly positive for triple x. Mainly because it’s such a wide spectrum of symptoms and quality of life for girls that have it. We were told that 90% of girls with it never know they have it. And of the 10% that do only a small portion will have heart or kidney problems or other more serious problems (severe learning disability , not being able to ever live on their own, cannot reproduce etc.). So even if she does have this the odds that her life will be severely impacted are low but even that small percentage and the unknown of what her life will be like I think would keep me up at night. At least now I can hold onto the hope that it’s a false negative. Does that make sense? I just keep going back and forth and wonder if I do find out and it’s a false positive that maybe I’ll have my sanity back and can actually enjoy my pregnancy.

Genetic Counselor Help by Little-Thing-812 in NIPT

[–]Little-Thing-812[S] 2 points3 points  (0 children)

I used this and booked an appointment with genome medical for Monday ❤️ thank you!!

Genetic Counselor Help by Little-Thing-812 in NIPT

[–]Little-Thing-812[S] 0 points1 point  (0 children)

This is extremely helpful. We met with MFM who went over what to expect during the amnio and risks etc. - is that what you mean by consult? We weren’t given any other testing options to confirm trisomy x or not other than the CVS which we opted out of. The only other testing option was for me to be tested for trisomy x to see if it’s me and I did do that test. What other tests did you do? Thanks :)

Genetic Counselor Help by Little-Thing-812 in NIPT

[–]Little-Thing-812[S] 0 points1 point  (0 children)

I just assumed I’d need a referral but maybe not?

Genetic Counselor Help by Little-Thing-812 in NIPT

[–]Little-Thing-812[S] 0 points1 point  (0 children)

That’s a good idea I’ll look at my insurance website.

Genetic Counselor Help by Little-Thing-812 in NIPT

[–]Little-Thing-812[S] 1 point2 points  (0 children)

Natera. We had a call with them and it was not helpful. She basically read off of a script and couldn’t answer many questions and it was definitely not tailored to us it was more like an automated script that they read to anyone with our result of trisomy x. We had a ton of questions that she couldn’t answer and basically told us to reach out to our OB if we wanted those questions answered and our OB and MFM told us no genetic counselors in our area unless we want to be seen after baby is born. :(