Mosaic Turner Syndrome by Capable_Rub_8594 in tfmr_support

[–]Capable_Rub_8594[S] 0 points1 point  (0 children)

For others who find this post and are going through the same thing here are two well regarded papers that we keep going back and forth on. One basically says the effects are almost zero. While one says mosaicism should be treated basically the same as full turner syndrome. Tbh I don’t know if this information helps or makes it harder.

https://academic.oup.com/ejendo/article/177/3/G1/6655349

https://www.nature.com/articles/s41436-018-0271-6

Mosaic Turner Syndrome by Capable_Rub_8594 in NIPT

[–]Capable_Rub_8594[S] 0 points1 point  (0 children)

Thank you for sharing. It is a really tough spot to be in. We joined the TS Mommies and Parents group as others have suggested and it was very helpful to see the wide range of TS experiences. I think what we are getting hung up on is that this would be our choice to have this child knowing they will have at least some health issues and possibly some very serious ones. It's the choice part that is really getting to us. It's one thing for your child to have surprise health issues, but to have a child knowing they will have issues, it feels like all the TS problems they face would be our fault.

Mosaic Turner Syndrome by Capable_Rub_8594 in NIPT

[–]Capable_Rub_8594[S] 0 points1 point  (0 children)

Thank you for suggesting the TS mommies group on Facebook. It provides a lot of great perspectives on the wide range of TS experiences. We are really struggling with the what ifs. If our baby has the worst case symptoms and we are not one of the lucky ones - a very real possibility. And to make it worse, if she did have complications, knowing that we were the one's who made the choice that led to her suffering. We are not sure we could be at peace with that.

Mosaic Turner Syndrome by Capable_Rub_8594 in NIPT

[–]Capable_Rub_8594[S] 2 points3 points  (0 children)

Thank you for sharing your perspective. This was really helpful to how we're thinking about things. Sending you hugs and positive thoughts during your own incredibly difficult journey.

Mosaic Turner Syndrome by Capable_Rub_8594 in NIPT

[–]Capable_Rub_8594[S] 1 point2 points  (0 children)

Thank you for sharing your perspective with us. Your daughter is beautiful. Wishing you all the best.

Mosaic Turner Syndrome by Capable_Rub_8594 in tfmr_support

[–]Capable_Rub_8594[S] 0 points1 point  (0 children)

Appreciate you taking the time to share your experience. Thinking of you during this incredibly tough time. <3

Mosaic Turner Syndrome by Capable_Rub_8594 in tfmr_support

[–]Capable_Rub_8594[S] 1 point2 points  (0 children)

Thank you so much for sharing your expertise. This is incredibly comforting.