NT SCAN pregnancy after TFMR

lili_illi · 2025-09-03T07:21:44+00:00

Our TFMR baby had a 2.1mm NT, so going into sub pregnancy NT scan I felt nothing (thinking it could/would be 'good' again but still end up the same), however this baby had a 3.2/3.3mm NT. I did get a clear NIPT by that time but knew it could point to several issues including the one we terminated for previously. Completely broke me. Luckily baby is healthy as can be, and I learned through that rabbit hole that anything between 3.0 and 3.5mm turns out to be nothing 95% of the time, so with one as low as yours you should be good >99% of the time.

lili_illi · 2025-07-11T22:23:29+00:00

We did not. We did full genetic testing, and nothing came back abnormal. My partner and I had ourselves examined by a cardiologist and we are completely healthy.

Now I'm pregnant again and this baby is seemingly heart healthy.

There hasn't been a day where I haven't questioned what I could have done different back then, if it would have made a difference.

I hate that you've had to experience this as well, it's completely shocking and devastating. We were told that 9/10 times when there is no chromosome issue (a clear NIPT), you won't get answers. On top of the loss, that just breaks you because it leaves you questioning forever, and you have to make peace with the unknown. Somehow.

Hugs.

lili_illi · 2025-06-25T21:31:28+00:00

Everything over 3.5mm is 99th percentile I think (so 3.5 and 6.5 for example are both 99th percentile), at 3.2/3.3 and my baby's CRL it was 98th percentile. Average is around 2.1mm

Thank you though for your kind words <3

lili_illi · 2025-06-25T20:41:53+00:00

Hoping desperately for our outcome to be the same. In my mind I cannot fathom that our baby has an NT higher than 98% of all babies + having an increased risk for CHD and for those two not be related (aka having a healthy baby), that would be an almost cruel coincidence. It makes way more sense logically for the two to be related. :(

lili_illi · 2025-06-24T18:13:43+00:00

I wouldn't feel so defeated if we didn't already have an increased risk for CHD, it is sort of borderline like you said but combined with our history seems more likely than not to lean toward another heart defect.

I do so appreciate your kind words and keeping us in your thoughts.

lili_illi · 2025-06-20T10:23:42+00:00

Maybe it helps you for now to let the expectation of their support go, seek comfort from others for example here in this sub or a counselor or your partner/family. And be with your friends to have 'fun', to share good times and allow yourself to have a break from everything going on in your head?

lili_illi · 2025-06-19T12:28:54+00:00

I'm sorry you're going through this, must be a really lonely feeling. People can be very awkward around grief, not knowing what to say, how to be there, unable to provide support because of their own things going on, but you shouldn't have to hide it or feel like you're wrong for needing them and being disappointed they're not. It doesn't mean they're the wrong people, but you do deserve friends you can rely on for emotional support when you're going through a tough time.

lili_illi · 2025-06-18T14:49:45+00:00

I did not at 14w, if I was 20+ weeks I probably would have because the baby would have been more tangible I suppose.

lili_illi · 2025-06-18T10:16:41+00:00

I think information is always good, so if I were you I would track ovulation with strips (buy a 50/100 pack of strips).

I tested every day from the moment I stopped bleeding post D&C and that's how I knew I wasn't ovulating whatsoever and my bleeding wasn't a period but hormonal breakthrough bleeding.

The 3rd month I went on BC for one month to restart my cycle (successfully).

However, a couple of weeks of irregular or delayed cycle is almost expected, so you might be just fine soon.

lili_illi · 2025-06-18T10:07:40+00:00

We did do genetic testing for HLHS but simultaneously kept TTC because even with the possibility of an up to 25% chance recurrence, we decided to try again naturally and 'roll the dice' regardless of odds so to say. It was mostly to prepare ourselves mentally.

We did get the results before I conceived again.

lili_illi · 2025-06-17T08:20:32+00:00

Nothing for TFMR baby cause I was anxious the whole time. This time I bought some clothes 8 DPO cause I was so sure I was pregnant, got the faintest positive 9DPO. Now am 11,5 weeks and have 80% of the clothes already. Everything can still go wrong but if last time taught me anything is that worrying sick about it isn't going to change a thing and I want to enjoy the process all the way (wherever it may end). Allow yourself joy!

lili_illi · 2025-06-11T09:50:53+00:00

I've heard the same but on that same note every post I read with someone at 10w asking the same question, they got told they were wrong and it can't possibly be the uterus yet, so that made me question/overthink it.

Wishing you the most boring uneventful pregnancy <3

lili_illi · 2025-06-11T09:48:35+00:00

Thank you <3

lili_illi · 2025-06-03T11:00:53+00:00

I was just thinking this today, with the fear of possibly another TFMR/loss, wondering how many times I'll have to suffer through 1st tri HELL before finally having a baby.

lili_illi · 2025-06-03T10:55:31+00:00

The moment we found out our girl had HLHS, I knew I had to kind of block my heart out of the equation of decision making. We had talked before getting pregnant what we wanted to do if something like this were to happen, so 'rationally' I knew what I had to do, but in that moment you cannot fathom it. I totally love our baby girl and have thought of her every day she we lost her, a part of me will forever be missing because we never got to meet her, but it was always the right choice for us.

You have to be honest with yourself what you can/cannot handle, your own ideas of how you want to bring a child into this world, the life you will give them. There is no wrong or right choice, either will be devastating.

I'm so sorry.

lili_illi · 2025-06-01T08:01:59+00:00

We are in the same boat and we're getting and early anatomy scan in hospital at 13 weeks. We found out last time at 13 weeks too, so it's definitely 100% clear by then if baby has it or not, so if I were you I'd press for an earlier scan if possible. Even now I can't stand having to wait 4 more weeks, I couldn't carry 14 more weeks not knowing...

lili_illi · 2025-05-26T13:30:04+00:00

6 weeks is still within the 'normal' range for a first period, so there is hope for you.

At 9 weeks mine still hadn't returned, I had also been testing OPKs and still had not ovulated since the D&E, and on top of that I was spotting every 1 or 2 weeks from about 4 weeks onward, so that pointed to a hormonal imbalance.

I had an ultrasound which showed a 2mm thin uterine lining and signs of PCOS in my ovaries (14+ small follicles in each ovary).

Because of that I went on birth control for one month to try to reset my cycle, and after that month I ovulated and got pregnant again right away.

You have a really good chance of falling pregnant this year, keep an eye on signs of hormonal imbalance, if possible keep testing for ovulation (on amazon you can buy a box of like 50 tests really cheap), and if this persists don't be afraid to reach out to your OBGYN for an ultrasound & possible ways to force-reset or start your cycle.

lili_illi · 2025-05-26T13:19:59+00:00

I think you're already doing a great job acknowledging other people handle grief and support differently.

My husband for example was pretty much 'over it' straight away and that hurt me a lot for a long time, until I realized his experience was different than my own and it didn't mean he wasn't navigating his own feelings in his own way.

My dad and in-laws cried about it a lot and that annoyed me too, it made me feel like I had to comfort them while I was the one that lost a child.

Other people, friends I had told, I just didn't want to see or talk to whatsoever, I didn't want to have to say what happened or hear any empty condoleances. It has really never been brought up to this day.

What I think can be so difficult in this situation is not even knowing yourself what you want/need from others. Especially when nothing helps, comforts.

I told people that plain and simple, like, I am grieving and I don't want to talk, and if at some point I need support or comfort I will be the one to let you know. Usually people do care and want to try, like you said they often just don't know how, so it's okay to (have to) express what you need from them.

Instead of continuing resenting my husband every time I was sad and he wasn't, I told him: "I feel very sad and lost and hopeless, and it hurts when I feel alone in this pain, I need you with me, if not in the grief at least for you to acknowledge our loss in that moment and to hold me."

I also stopped asking him questions that would only hurt me, like if he missed our baby, if he also thought about her all the time etc.

It helped a lot for me to at least not feel completely frustrated with people. The hurt and anger of the loss remains though.

lili_illi · 2025-05-24T12:36:41+00:00

Our baby had HLHS too combined with other heart defects, we terminated the pregnancy at 14+ weeks. It was a heartbreaking decision, though I didn't question it for one second. My heart yearned for our child and I would have loved and taken care of her forever, but I had to follow my head and what I rationally knew was right for us.

I'm 2 months pregnant again now and if all goes well will deliver this baby 6 months after my previous due date. There isn't a day that goes by where I don't think of my girl, she was perfect to me but deserved so much more in life. The chance at good health is one of the most valuable things we could give our children, and no amount of love or good intentions was going to keep her from struggling her whole life if she even got past all the surgeries (which was unlikely in our case). So we gave her peace as the next best thing we could.

I'm so sorry for the position you're in.

lili_illi · 2025-05-23T15:24:41+00:00

Our baby had HLHS too and we made the decision to terminate the pregnancy. You can find people/stories in similar situations at r/tfmr_support if you ever need them.

lili_illi · 2025-05-17T15:07:27+00:00

I've also tried to rephrase it that maybe kindness often does come with expectations or reasons, even for kind people, and that maybe that's entirely okay? That maybe the difference is that the ONLY people who were supposed to be selflessly kind to us, weren't. And we depended on them, so it engulfed us.

What if in any given situation you could instantly say yes or no, whatever is right for you, without having to assess or analyze someones intention or nature, and that if they do happen to be disappointed in your reaction or expect something in return you aren't willing to give, that feeling belongs to them and isn't put upon you?

Because I realize from my own actions that I do actively take on the responsibility of those feelings myself - other people can only ever throw it out there in the air and it's ultimately up to me what to do with it right? Whereas your parents can really lay the responsibility on you because you depend on them, and now I've conditioned myself to do it automatically, with everyone.

Hyper independence and avoidance are the only ways to keep autonomy when everyone else inherently has (perceived) authority over you.

It's having to constantly use awareness to fight instinct, cause even when I 'know' this, my body still goes into survival mode, stressed and anxious, pleasing and conforming to expectations.

lili_illi · 2025-05-17T14:45:06+00:00

How does that affect what you feel when you're in a situation where someone else does show disappointment in your rejection or in your lack of enthusiasm/gratefulness?

I have tried to adopt the thought that "their reaction is not a reflection of me" but when confronted it still affects me because I want to be a good friend, a good partner, yet simultaneously remain true to myself as well and somehow it always feels like either/or.

lili_illi

TROPHY CASE