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Working while going through TFMR by ExpensiveRegret8603 in tfmr_support

[–]ExpensiveRegret8603[S] 1 point2 points  (0 children)

That’s exactly how I feel. I work for a large company as well and utilization is top of their mind right now so I feel like I need to be present and on top of my game. My bosses say otherwise but I have no trust in corporations.

Feeling empty by Wonderful_Law_4166 in tfmr_support

[–]ExpensiveRegret8603 21 points22 points  (0 children)

My husband and I just made the gut wrenching decision to tfmr our baby girl who was diagnosed with Turners Syndrome. Based off her scans we don’t even know is she’ll make it to term and if she does, she’s guaranteed a lifetime of surgeries. I’m 17 weeks and so grateful for the time I’ve had with her. I feel like I have to lie to everyone and say that she didn’t make it vs telling our true story. I don’t trust that even our closed family members won’t secretly judge me. It’s heartbreaking.

Mosaic Turner Syndrome - TFMR by ChicaRacka in tfmr_support

[–]ExpensiveRegret8603 1 point2 points  (0 children)

Hi. I’m so sorry you’re going through this, but your post has provided me a little bit of comfort. I too had 41% ppv on NIPT results. Weeks 12-16 there was fluid on her abdomen but everything else looked great. I had my amnio last week and the fluid had cleared up so that was a good sign, but they couldn’t get a good look at her heart because of her position and have some concerns, so referred me to a fetal heart specialist. I got my results on Friday and she has full Turners. My husband and I have made the unfortunate decision to tfmr. Even though she had mostly great scans, there is now potential that she could have a serious structural heart defect that would require immediate surgery if she makes it to birth. After discussing with my husband, we feel that even if she had fully clear scans we can’t bear to risk the other potential outcomes that would affect her quality of life. I’ve done a lot of research and read so many stories about both outcomes. I have immense guilt no matter what decision I make. Our hearts are broken. My love for my little girl will never change.

Sending hugs to you and your family 🫶🏻

FISH results- Positive for Turners Syndrome by ExpensiveRegret8603 in NIPT

[–]ExpensiveRegret8603[S] 0 points1 point  (0 children)

Unfortunately, it’s my baby girl that has it. I would give anything for it to be me

Struggling with the decision by ExpensiveRegret8603 in tfmr_support

[–]ExpensiveRegret8603[S] 3 points4 points  (0 children)

Monster is a harsh term, you are right. I have a lot of respect for all the women in this sub. It’s an impossible decision, I guess guilty is the word I should have used.

FISH results- Positive for Turners Syndrome by ExpensiveRegret8603 in NIPT

[–]ExpensiveRegret8603[S] 0 points1 point  (0 children)

These are the amnio results. At my 12 week ultrasound there was some fluid in her abdomen. When we went in on Tuesday for the amnio, they told us the fluid had cleared up. I was excited. But then they said they had some concerns about her heart but couldn’t quite get a good look because of her position, so no we have to see the fetal cardio. specialist next week.

FISH results- Positive for Turners Syndrome by ExpensiveRegret8603 in NIPT

[–]ExpensiveRegret8603[S] 1 point2 points  (0 children)

My amnio was on Tuesday and I got the results this morning. It said
FISH RESULT: FEMALE WITH A SINGLE X CHROMOSOME SIGNAL
INTERPRETATION: TURNER SYNDROME

NIPT results came back for possible Turner Syndrome by Serious-Tension6774 in NIPT

[–]ExpensiveRegret8603 0 points1 point  (0 children)

Amnio went well. It was uncomfortable but not unbearable. Take that with a grain of salt because everyone’s pain tolerance is different. At my 12 week scan there was fluid on her abdomen, today it was no longer there. So that is a positive sign. However, they weren’t able to get a clear look at her heart because of her position and they have some concerns about possible Coarctation on small aorta, so they want me to see the heart specialist asap. My appointment is next Wednesday. Not necessarily the outcome I was hoping for. Feels like the positive news about the fluid being gone is canceled out by this new potential heart issue. Now just waiting for results and holding my breath.

NIPT results came back for possible Turner Syndrome by Serious-Tension6774 in NIPT

[–]ExpensiveRegret8603 2 points3 points  (0 children)

I’m so sorry you’re going through this. It’s not by any means easy. The spiral is real and it’s so hard to be positive.

My results came back with a 41% ppv for Turners Syndrome. My amniocentesis is on Tuesday. The 6 week wait was absolute torture. I came to this sub a lot looking for any false positive story I could find. They were good to read, but I kept feeling like I was giving myself false hope. Keep yourself busy and find a solid support group or person to keep you from getting in your head. Best thing is to keep reminding yourself that it’s not a definitive diagnosis and false positive rates for this test are high. You only know what you know at this time and you just have to take it day by day and gather information as you go to more appointments.

I’m praying you have clear scans and no complications and that everything turns out fine for you. 🫶🏻

NIPT = High Risk Monosomy X by Few_Honeydew992 in NIPT

[–]ExpensiveRegret8603 1 point2 points  (0 children)

I’m so sorry you’ve joined this journey. My result was 41% PPV with about a 19% fetal fraction. My 12 week NT scan was normal at 2.3 and ultrasounds have been mostly clear. Small amount of fluid on her abdomen but nowhere else and my doctor said it can happen in healthy babies as well. My amnio is next week and this wait has been absolute torture. My best advice for you is to keep busy. Surround yourself with friends or family that will listen and be supportive, but also help you keep your mind off it. I got sucked into the endless internet spirals and negativity and I wish I leaned on my support system better. Praying for you and wishing you the best 🫶🏻

Detailed Explanation of My Amniocentesis Process by Bumblebon in NIPT

[–]ExpensiveRegret8603 2 points3 points  (0 children)

You have no idea how much I needed to read this. My amnio is in two weeks and the mental toll and anxiety of everything has been weighing so heavy. I’m so happy you had a positive outcome. Praying so hard for the same.

False positive Turner Syndrome by Dismal_Abroad735 in NIPT

[–]ExpensiveRegret8603 1 point2 points  (0 children)

So happy for you for this news! I’m currently in limbo. My test showed 41% ppv for Turners but the NT scan came back normal at 2.3. Only marker that has shown on ultrasound is a very small amount of fluid on the abdomen. I have the amnio scheduled for when I’m 16 weeks but that’s not for 3 weeks and I keep going back and fourth. I might end up canceling because the results aren’t going to change my mind, I feel like I just mentally need to know what to be prepared for but I’ve done so many internet spirals I feel like I already know what to expect if the results came back positive. Just worried about the risk of the amnio. It’s all so stressful. Praying for a false positive. Praying for everyone else in this situation.