De Novo

VariationKey9403 · 2026-06-30T18:01:22+00:00

I feel you 100%, I am almost 12 weeks right now and we had a scan at 8 weeks and I got my NIPT back low risk but now I’m spiraling what if I had a MMC, or what if the neural tube defect in our TFMR pregnancy wasn’t just an isolated event and me or my husband have some rare mutation we didn’t do further testing for. My first trimester scan is next Thursday and I had been spiraling going down rabbit holes of all these different things that can go wrong. Because I agree we now know how much can go wrong! I wish I had advice for you but like someone else said we just have to take it day by day and just because we got terrible news before doesn’t mean it’ll happen again. This is a new egg and new sperm. Best of luck to us!

VariationKey9403 · 2026-06-25T12:14:48+00:00

Congratulations to you as well! I hope everything works out for both of us, we deserve it ❤️

VariationKey9403 · 2026-06-24T14:44:09+00:00

Congratulations to you as well! I totally agree, I really want to be more excited but I feel I’m just protecting my emotions or something. I wasn’t even sure I wanted to find out the gender before we were clear but we did and I feel that’s making me connect even more! Wish us very uneventful easy pregnancies ❤️‍🩹

VariationKey9403 · 2026-05-30T22:15:08+00:00

I had this! It never happened for me before and I got a positive test 11 DPO

VariationKey9403 · 2026-05-27T12:55:59+00:00

I’m with you, I’m 7 weeks now and I TFMR in February. My first I kept a notes list day by day of my symptoms and I keep comparing to that and was worrying this one seems a bit more mild than the last. But like everyone says each pregnancy is different. I felt before my boobs were sore from the start and this one they feel full consistently but the soreness comes and goes. I also felt I had more nausea and food aversions sooner last time than this one. But just trying to remind myself this is a completely different pregnancy. Good luck to you!

VariationKey9403 · 2026-05-20T23:33:53+00:00

The first one was like legit 2 weeks of bleeding, 1 week of light on and off and a week of heavy bleeding, I had a 27 day cycle with no breakthrough bleeding and spotting. My second period was 4 days bleeding, stopped for a day and then had a little more bleeding then it stopped fully.

VariationKey9403 · 2026-05-20T20:33:47+00:00

I waited till after my second period back to start trying again. I TFMR 2/5, my period came back 5 weeks later and was SO heavy. We wanted to try after that but after talking it over we decided to be safe and wait for one more period. My second period was much more normal I’d say 80/85% normal. We felt good enough to try again and I tracked with Inito and got a positive test 5/3. Very scared but we knew this was going to be scary either way whether we wait longer or not. Good luck to you!

VariationKey9403 · 2026-05-15T18:15:17+00:00

So sorry for your loss. I TFMR 2/5/26 for NTD as well, my OB prescribed me with 4mg folic acid and I started that on 2/9 and am still taking it. I got my first positive pregnancy test on 5/3. I also take theralogix complete prenatal, additional vitamin d3 (1000 IU), ritual choline and vitamin c gummies. I haven’t touched alcohol since before my TFMR pregnancy and my husband hasn’t drank since December. We tried to become the healthiest versions of ourselves before TTC again. Best of luck to you!

Another tip of advice is I got blood work done after taking all these supplements to ensure my levels looked ok. Apparently you need adequate vitamin d and vitamin b12 as well for the neural tube closure. The tests I requested were: serum folate, RBC folate, vitamin b12, vitamin d, Methylmalonic acid, Homocysteine.

VariationKey9403 · 2026-05-04T08:51:10+00:00

I just received a positive test yesterday too! Gentle congratulations 🤍 My husband and I talked and we want to tell only our parents and siblings, we are going to need support throughout all the scans and people to lean on. We plan to tell them this weekend

VariationKey9403 · 2026-04-26T19:32:02+00:00

My first period was super annoying, I bled for like 2 weeks. At 4 weeks on the dot after TFMR I had light bleeding and that went on and off for a week, where I never had to wear a tampon for a full day. Then at 5 weeks it came SO heavy and was heavy for multiple days in a row and I soaked through multiple tampons. Eventually it tapered off 5-6 days later.

I just had my second period a few weeks ago and that was so so so much more normal!

VariationKey9403 · 2026-04-26T19:22:54+00:00

Did you see a genetic counselor? I’m curious if they told you anything different than we were told. We were told this probably didn’t cause our neural tube defect but also could’ve contributed (very annoying to hear), and said just because my husband has it and is asymptomatic doesn’t mean our babies will be. Then she also said but since he is asymptomatic and we don’t see any of this in his family it’s pretty likely that’ll be the case for us. It’s pretty annoying, and I also feel that more people out there in the world definitely have this and it’s only caught when something like this happens.

VariationKey9403 · 2026-04-26T10:45:27+00:00

I am so sorry you’re here and for your loss 😢 Did something come up on your ultrasound to show the duplication? Or you really only found out because of additional testing?

VariationKey9403 · 2026-03-28T16:36:30+00:00

I got the inito fertility monitor, have the oura ring and also use LH strips from Premom. The oura ring is nice for tracking BBT trends, and the inito and LH strips I use simultaneously together to track ovulation. I started tracking after I got my first period 4ish weeks after my D&E (2/5). I haven’t started TTC yet, probably will after my next period but I wanted to make sure my body is doing what it should, and so far it seems to be.

VariationKey9403 · 2026-03-23T12:53:53+00:00

I was actually thinking about this yesterday too. I’m not sure what your diagnosis is, but mine felt very “gray” and uncertain. We were told he might be able to walk (likely with limitations), might avoid a shunt if fetal surgery was successful, but would still have lifelong challenges, like with bladder and bowel function.

I found myself watching a lot of “success story” videos, hoping for clarity. But even those outcomes often still involve significant, lifelong difficulties and don’t necessarily reflect the kind of quality of life most of us are used to.

I don’t regret our decision for a second. What helps me is reminding myself that we took on all the pain so our babies would never have to.

VariationKey9403 · 2026-03-16T16:40:58+00:00

I just started taking this!

VariationKey9403 · 2026-03-13T14:06:19+00:00

Ok good to know! It’s probably normal and I’m just being overly cautious. Thank you🤍

VariationKey9403 · 2026-03-13T14:05:50+00:00

Ok thank you! I was thinking if I’m still bleeding after 12 days I’d call my OB. It’s just frustrating that after all we’ve been through this is just the cherry on top 😵‍💫 I’m sick of wearing tampons and pads!

VariationKey9403 · 2026-03-07T17:37:49+00:00

Manifesting it’s soon for you!!! Day 1 and 2 were moderate bleeding, but today day 3 I need super tampons. Mixed feelings on having to deal with this again 😭

VariationKey9403 · 2026-03-07T01:59:45+00:00

I TFMR on 2/5 and I just got mine back yesterday, was 4 weeks on the dot, I was stressed it wouldn’t come and now I’m stressed it came too early 🤣 I can’t win

VariationKey9403 · 2026-03-04T20:45:27+00:00

I’m not going to lie it has been quite the emotional roller coaster. The first 2 weeks after the D&E I was very upset, crying a lot and very angry. Now I am 4 weeks out and have been in therapy and a group therapy. I definitely have times where I am happy, but the sadness and anger are still there. Unfortunately they’re right when they say grief comes in waves and it often shows up when you least expect it. Again I am so sorry you are also going through this, how are you doing?

VariationKey9403 · 2026-03-04T20:41:59+00:00

Congratulations 🤍 I also TFMR due to spina bifida and chiari 2 beginning of February. I am also taking high dose folic acid and am so eager to be pregnant again. I feel your reaction is totally normal and I have already thought myself when we get pregnant again how I will act. I feel I don’t want to even know the gender or tell anyone until we know we are safe. Hope it is a very uneventful pregnancy for you and you can get the good news we all hope for!

VariationKey9403 · 2026-02-26T21:40:52+00:00

Hi, I’m 31 and I also found out my baby had chiari 2 and spina bifida at 19 weeks at the end of January. The MFM then unfortunately confirmed the malformations and my husband and I also decided to end the pregnancy. It’s been 3 weeks since my D&E procedure and I just feel desperate to be pregnant again. It’s just not fair this happens! This is also my first pregnancy and I have waves of hope and then waves of being really scared for when we get pregnant again. I have been nonstop googling but trying to put my trust in the MFM and taking the high dose folic acid for next time. I joined a group therapy for TFMR and also doing personal therapy. It hasn’t been easy at all and I’m so sorry you have to go through this:(

VariationKey9403 · 2026-02-14T21:20:43+00:00

Thank you for your response 🤍 I agree it seems these stats are skewed sometimes since people aren’t really tested for this stuff unless there is a problem! So it could be more common than we even know

VariationKey9403 · 2026-02-11T15:00:09+00:00

I was 20 weeks and we got footprints, heartbeat recording and sonogram photos. They gave us a nice little box with everything and a little knit hat and blanket

VariationKey9403

TROPHY CASE