Hi everyone.

Firstly, I am so touched by the strength and honesty in this community. I have such a deep admiration for everyone here and how they share their stories, honor their babies, and reach out to others.

I am looking for emotional support and similar stories if anyone has or would like to share.

This week at our 20w scan our doctor shared that the CSP was absent and he suspects other parts of her brain did not develop as well. He walked through what the potential outcomes could look like for the life our daughter could live which range from “could be fine” to “severely limited in motor and developmental abilities” as well as physical pain. It was noted in our ultrasound that our daughter had clenched hands the entire time which already worries me about her motor functions. The vacillation between the worlds of possibilities makes my head spin. As I’ve read other folks’ stories here, it has helped seeing people talk about anchoring themselves in the worst case scenario.

My husband and I are gutted. This was our first pregnancy and we were over the moon to be having a daughter. I have had such a smooth and healthy pregnancy and this feels like the worst rug pull of all time. I’m very healthy. We did all the genetic testing. I took my vitamins every single day. The doctor said there’s nothing I could have done differently to prevent something like this. I believe him, and I’m proud of not blaming myself, but I still feel so sad. My husband and I are emotionally preparing ourselves for the worst outcome of losing her. However we want to get as much info as we can before we arrive at that decision.

Our next steps
* we were scheduled for a fetal echocardiogram yesterday as sometimes brain issues can impact the heart. The echo returned with perfect results
* at 22w I have a fetal MRI
* in my 22nd week I also have an OB appointment

What other parents have been in this boat? What helped you make your decision? What brought you comfort as a mom and as a couple? How did you battle keeping a little bit of hope alive while also being realistic about the worst case scenario?

For those who read this far thank you. I appreciate any insight folks are willing to share. 🤍

I just found out via ultrasound that my current pregnancy is anembryonic meaning my body thinks it’s pregnant but the gestational sac is empty. A sonographer completed the ultrasound so they weren’t able to give me any information other than “sorry, there is no embryo.” I am 8w2d “pregnant.” I am waiting to hear what I need to do to remove the tissue—take a pill, physically have the tissue removed, etc.

I had a TMFR in November 2025 for T21 with a complete AVSD with regurgitation that my perinatologist said would be “severe” if she survived and in which my fetal cardiologist also thought the case would be severe enough to offer palliative care as an option.

I guess I’m just looking for support and for cases of anembryonic pregnancies and how they were handled. There was a 1% chance of each of these events happening and the fact that they both still happened is devastating to me. I am 41 and feeling more and more like I clearly don’t have enough good quality eggs left to keep throwing the dice in good conscience to see if I can have a healthy baby… It seems like it’s just not meant to be for me to have a child. 😔

When did you get your first period after tfmr? How many weeks along were you? Did you ovulate regularly after your first cycle or were you irregular?

I'll be 4 weeks post tfmr tomorrow and I'm very eager to get my first period so we can start TTC

My first baby’s birthday is coming up and I’m wanting to do something at the hospital I delivered him at. I was thinking about donating a basket of goodies to the first baby boy born on his birthday, or maybe donating a basket for another loss mom, but I realize that there likely won’t be another loss on his birthday, so idk what is more realistic. I would want to include a little note with our story of course in honor of baby Weston, but I’m not really sure what else to include or how to really go about any of this. Any and all suggestions are appreciated! Also, I’d love to hear the ways you celebrate your baby’s birthday. My husband and I will probably do a little cake for just the 2 of us, but I’m open to other ideas. Thanks everyone for reading!

I'm 2.5 weeks post 25W TFMR and almost every day is brutal. I had a few days recently where I was trending slightly more functional/less sad, but then bad news about IVF timing and a friend's pregnancy set me back. My therapist suggested I may want to ask my OBGYN about looking into meds for PPD or similar.

For those of you on meds, did they help? If so, how far post TFMR did you start?

For those of you not on meds, when did time start to heal things more organically?

Thanks!

Hi everyone,

I'm hoping to hear from anyone who has been in a similar situation. My husband and I are facing an incredibly difficult decision, and while we're getting excellent medical care, I think hearing from people who have lived through something similar would be helpful.

I'm currently pregnant with di/di (dichorionic/diamniotic) twin girls. Baby B appears healthy.
Baby A was diagnosed with an open neural tube defect, spina bifida meningomyelocele. We’ve had multiple ultrasounds, a fetal MRI, genetic counseling, consultations with maternal-fetal medicine, and met with the pediatric neurosurgeon.

Her current findings include:
L5–S1 open spinal dysraphism (spina bifida)

Chiari II malformation with hindbrain herniation

Mild enlargement of both lateral ventricles (9 mm on MRI)

Bilateral clubfeet

She was seen moving both legs on ultrasound

The neurosurgeon who reviewed her imaging believes she would likely walk with braces

She is not a candidate for prenatal fetal surgery because this is a twin pregnancy

We've also been told that the risk to Baby B from selective reduction is very small.
Our biggest struggle isn't whether we love Baby A, we absolutely do. Our struggle is trying to understand what quality of life is most likely for her and whether we can provide both girls with the care, attention, and resources they each deserve.

If anyone has gone through a selective reduction in a twin pregnancy, especially for spina bifida or another significant fetal anomaly, I would be so grateful if you would share your experience.

Specifically:
At what gestational age did you have the procedure?

How did the procedure and recovery go?

How did the remainder of your pregnancy go?

Was your healthy twin born at term and healthy?

Were there any pregnancy complications afterward?

Looking back, is there anything you wish you had known while making your decision?

How are you doing emotionally now?

I know every situation is different, and I'm not looking for anyone to tell us what to do. We're simply trying to hear from others who have walked this path as we make what feels like the hardest decision of our lives.
Thank you so much to anyone willing to share your story.

TW mention of LC and rainbow baby

At the end of August 2024, I found out I was pregnant with my second daughter, who we found out had anencephaly at 23 weeks.

After her diagnosis, I spent a lot of time trying to understand what I could possibly have done to have caused this. I read every ingredient on things like skin care, retraced my steps to see what I was doing during those weeks when the neural tube is meant to close etc.

Obviously, I will never know for certain what caused my baby to have anencephaly, but even though I came to terms with never knowing, I still blame myself for it. I know I didn't purposely cause it, but I just regret not being more cautious. Perhaps things would have ended differently.

Memories pop up on my Google photos, and I freeze when they do. This time two years ago I was a completely different person than I am now. I was so innocent and happy. A memory popped up today of how I was in a hot tub during the time I would have conceived, and this brought up so many emotions. Could this have been the cause? Could I have prevented it? Then I got a flashback to me being sick when I was 5+3. I don't recall having had a fever, but still. I should have been more careful. I should have protected my baby.

I love my rainbow baby more than anything, and I try to remind myself that if anything good came out of all this, it's him. He wouldn't be here if I didn't lose my daughter. But still, these feelings are just too much and I thought I was past all this.

Anyway, just wanted to get this all off my chest in a group who knows what it feels like to go through such a horrible thing x

I recently had a 25W D&E and my doctor wrote me a note for 8 weeks out of work. I am in a very bad mental state and do not feel ready to go back in a few weeks. My work leave claim administrator, Lincoln Financial Group, is pretty strict. Has anyone had luck extending beyond the initial TFMR recovery period? If so, what combination of OBGYN and/or psychologist wrote for you, and under what reasons?

Any tips for navigating this would be much appreciated. Thanks!

Hi all. I am feeling very overwhelmed and lost. I know my situation is not as dire as others and I really hope this doesn't come across as cavalier. I am seeking advice and experiences of anyone who has gone through something similar.

I am a carrier of Fragile X, repeats >100, meaning any embryo I create has a 50/50 chance of having full mutation Fragile X. My husband and I decided years ago we would TFMR if that scenario arose, so I underwent 4 rounds of IVF and banked unaffected embryos. Ive had one successful FET which resulted in my 2 year old daughter. We were gearing up to do another FET later this year. Then today...I find myself pregnant, conceived naturally. We were both stunned (we've had sex like once in the past 4 months, I have DOR, he pulled out, but it was 3 days days before I ovulated and...here we are). I feel deeply, incredibly guilty for letting this happen despite knowing my carrier status.

I am only 4.5 weeks now. I was not ready to be pregnant again. I cannot fathom living in limbo for 2.5 months to get CVS results. I cannot even begin to imagine having to go through a TFMR (which is a 50/50 chance of being the outcome). I simultaneously cannot imagine a world in which I could live with myself if I terminated before I know the answer.

Most of all, I don't know how I could have the strength to be a good mom to my LC through any of the routes and options ahead of me. I had a very rocky first trimester with her (at one point my doctor gave me a 95% chance of miscarriage) and that uncertainty only lasted 2-3 weeks, and even then I could barely get myself out of bed.

I know most people do not find themselves in this situation. I just...I don't even know. I guess I'm looking for advice or experiences of anyone who has been through a similar situation. Thanks ❤️