We just had our 12 week NT and came back with a 3.6mm septated cystic hygroma. No signs of structural abnormalities. Also submitted blood work for the NIPT.

The MFM doctor said that it’s a 50% chance of a chromosomal issue, which can only really be confidently diagnosed with an amnio at 16 weeks (additional ultrasound then too). The NIPT results are reliable for Downs but not the other chromosomal conditions.

IF the amnio shows a chromosomal or genetic defect, my husband and I are aligned on TFMR.

If it is clear, it could still be an issue of a heart defect or lymph issue, which would be diagnosed at 18 weeks at a fetal cardiac echo and then at 20 weeks at the anatomy scan. the prognosis of those are unknown right now given it could be a range of outcomes. We would likely TFMR in those instances too.

There’s like a 15-20% chance it goes away on its own (hygroma shrinks) and we have a healthy baby.

We are not rolling the dice and pray kind of people. I would rather be conservative and TFMR to eliminate the doubt. I am 38 and we conceived on our second attempt, and we already have a healthy toddler. So we don’t feel desperate for this pregnancy to succeed, although it has been very upsetting and emotional to hear this news.

But what’s the right stage to make that call, and what to do when the results aren’t clear-cut?

I worry about results of all these further tests being negative or a judgment call and then we say “let’s go for it” and then our baby is born with issues.

But at which point is it too hasty to say, let’s proceed with termination and abandon hope? Am I not fairly weighing the possibility of a healthy baby?

There seems to be a real con to waiting until after the anatomy scan, which is emotional turmoil of delivering/terminating a more developed fetus that perhaps has been kicking, and with which you have developed more of an emotional connection. How do I weigh that against getting all the data?

Just needing some encouragement right now. Have a beautiful healthy 3 year old already and was so excited for him to have a sibling. Got a positive NIPT test for high risk trisomy 21 at 11 weeks. Got the amino at 16 and got positive results back at 18 along with some other concerns. News was hard. Don’t have the condition in the family and doctors said it wasn’t genetic just an anomaly.

Why my baby, you know? Husband wants to try again and even with the doctors reassurance I still worry.
How long does it take to start trying again?

We told people about this pregnancy so feels embarrassing because what do I even say? It’s not their business of course but it just feels weird… idk.

Thanks for reading and for words of encouragement.

Since June I have just been grieving the loss of my little baby boy. I knew that saying goodbye was necessary, so although I was absolutely wild with grief, I did what I had to do. Some days are worse than others, but I knew I had gotten through the worst of it by now.

What I did not expect was randomly starting to have flashbacks this weekend. Nothing necessarily triggered it, I was just eating dinner and bam. Everything I had to set aside my feelings and do to hasten the death of my son, the researching, the scheduling, the traveling out of state, the paying money like it was something I wanted. Absolutely overwhelmed by the *horror* of it all. Like a bolt of lightning on a clear day, it hit me out of nowhere and it's hard to imagine ever being okay again. I thought I was just devastated that my son was gone, and it turns out there is a whole new layer of trauma that my brain was hiding from me until I had enough distance to process it.

Thankfully I am seeing a therapist already. Not saying I have PTSD necessarily, but I was surprised to learn that a study found over 40% of women who TFMR end up with PTSD. I found this fact validating to what I feel, and my hope is that if anyone is on the fence about therapy then you go ahead and get it. Sad we are all here, but so thankful to have this group for support.

Less than a week ago we had to terminate due to medical reasons, and an unexpected consequence is it negatively impacting my friendships. I cannot keep explaining that there was no “choice”, and I don’t even want to imagine “trying again.”

I genuinely feeling I’ve been forced against my will to outgrow some friendships I’d been really loving and thriving in prior, because now they don’t seem to get my life or what it looks like at all. I can’t relate to them or what they have going on, and it seems like the realities of TFMR overwhelm them, even when I barely mention it.

I am really seeking a friend who can actually relate to my experience. I have 2 living kids, had 1 early miscarriage, and 1 recent medically necessary termination of a wanted pregnancy. I truly would love to be internet BFFs with other folks who understand and relate to me.

Based in the PNW if it matters

i had my d&e about 7 ish weeks ago, and following genetic testing, my baby is now ready to be cremated. the thought never crossed my mind but i’m considering asking the funeral home if i can see him prior to cremation? i don’t know if that’s an odd request? he was 19 weeks so i know he’s going to be so tiny, but apart of me is genuinely curious and thinks that it may help me grieve.

i guess im just posting to ask what others have done and to validate that im not weird for wanting to see him lol

I'm about 7 weeks after a TFMR at the beginning of the second trimester for T18.

The first 10 days were absolute hell, I had a surgery and deeply regretted it because I felt I had no other choice and didn't even get to meet my girl. I just went to sleep pregnant and woke up with an empty belly. My baby girl was inside me and suddenly she was nowhere to be found. I still feel as if it's something I can't wrap my mind around: how is it possible that she's nowhere?

In addition, my milk came in despite being so early in pregnancy and I wasn't prepared, nobody had warned me of this possibility and it felt like the cruelest joke.

The following weeks were a rollercoaster of emotions, crying then being hopeful for the future, wanting to get pregnant straight away, wanting to never get pregnant again.

Now I feel better, I can function better, some days I can go the whole day without feeling sadness (not without thinking of her, I think of her every single day).

But some days, out of the blue, are so hard.

Like today: I miss her so so much. How can you miss this much someone you haven't even ever met? I feel it deep in my bones, in my heart.

I miss her so much it hurts and I don't know what to do..

I live in Alabama and am looking to TFMR. Has anyone from a banned state traveled for a TFMR? Any advice on where to start? Cost estimate?

Currently 20 weeks and 3 days. At 14 weeks our nipt came back high risk for trisomy 18. We got referred to a high risk doctor with a genetic counselor. They recommended the amniocentesis so we set it up at a hospital. We did that on October 2nd. Today is October 21st and we still don’t have answers.
We got our fish results back a few days after that said normal so they said he doesn’t have full trisomy 18 but could still have mosiac or partial so wait for full results.
I went back on the 16th and there was still no results, they said I should have them the 19th. The 19th comes and no results and they send me a message saying it should be back by the 21st. Well today comes and they call me saying the lab is backed up because there’s something different with the chromosome 18 and they wanted to grow more cells to look at and they thought they’d be ready to look at today and they weren’t so they’re hoping tomorrow. They also said if this doesn’t give them the answers their looking for that they want to do an additional test called the cma and when I look that up it says it can take another 2-3 weeks to process. Which feels ridiculous. Has anyone ever dealt with this? And how long did it end up taking? We’re getting so upset and frustrated because tomorrow marks 7 weeks that we’ve been going through this process and we still have no answers and it’s heartbreaking. It’s causing us so much stress and depression and we feel like we’re running out of time to make a decision.

I just found out I'm pregnant, 6 weeks. I have two gorgeous boys 6&3, on my second pregnancy I got diagnosed with a rare blood disorder. That pregnancy was very overwhelming due to the high risk, I ended up at 3 appts a week, admitted for monitoring at 32 weeks, section at 35+5. Baby was total perfection thankfully. However the last trimester was spent being told how he would probably inherit my new illness, and how the birth could fatally impact one or both of us. We were told best case scenario he would be in the NICU for at least a few weeks. The Anxiety and guilt during that pregnancy was horrendous. All while battling the illness as well and then the time away from my first born nearly broke me! After the baby arrived my condition worsened. I spent years in and out of hospital, 1,000s of steroids, Chemo, and finally a surgery, six months ago, that has given me my life back. My illness remains but body can manage it and I feel almost no symptoms!!! 👏🏻 Bam - I get pregnant! Due to the surgery, the consultants believe this pregnancy would be easier but due to the rarity of the illness we don't actually know how it will all go. I'm also 40 next year which adds another layer of complications. I also just feel like I got my life back, my time with my boys back, my friends! But the guilt of a termination just because it would be hard or medically difficult feels overwhelming. Am I just using my illness as an excuse? This pregnancy would be high risk on multiple levels, but it could all work out perfectly too, I mean technically the last worked out, and my baby was perfect! Like if I power through I could probably manage to survive, and hopefully have another gorgeous little baby.......but I also would really like to actually get a chance to finally enjoy the life iv built, without illness and all the appts and hospitals. My consultant said we could manage it though....so am I just using the illness as reason? Is it really a TFMR if I have other reasons? Has anyone ever been through this? What does the other side look like?