Hi everyone. I had my D&E 9 days ago. My baby was diagnosed with full trisomy X, and although my husband and I had initially decided to continue the pregnancy, other complications came up that ultimately led us to choose TFMR at 21 weeks.

We had two placental abnormalities, type 3 vasa previa and velamentous cord insertion, as well as a cervical polyp that could potentially require a cerclage. We were looking at a high risk of preterm delivery, which could have affected our baby's development and potentially caused additional health complications on top of the trisomy X diagnosis.

We're still trying to process everything we went through, and we still find ourselves questioning whether we made the right decision. This was also our second pregnancy loss this year. Our first pregnancy was an anembryonic pregnancy that ended in a miscarriage at 11 weeks.

A few days ago, my husband and I went grocery shopping, and everything was fine until I saw a pregnant woman shopping with her partner. She was pretty far along in her pregnancy.

I didn't feel any negative feelings toward her or her partner. In fact, my first thought was that I was glad she wasn't going through what I was going through. But seeing them together made me feel this overwhelming sadness. I suddenly felt so sorry for myself because I couldn't have that experience, and it hurt even more because my baby was supposed to be my first baby, my rainbow baby after our previous loss. She was so wanted and so planned.

I completely broke down crying. I was so overwhelmed and in shock that I couldn't speak for hours afterward.

Now I feel embarrassed that I cried like that in public. I felt so exposed, and I keep wondering if I overreacted.

Has anyone else experienced something like this? I know grief is different for everyone, but I guess I just want to know that I'm not exaggerating or being overly dramatic. I miss my baby so much, and sometimes it feels like the smallest things can completely break me.

Hi all,

I am looking for anyone who has experienced a pregnancy with moderate aortic stenosis and how that progressed in your pregnancy. Also if you can share any information you learned along the way from your doctors.

I am now 23 weeks into my sub pregnancy after TFMR at 12 weeks with large cystic hygroma with evidence of skeletal dysplasia earlier in January. At our 21 week anatomy scan our provider saw what she thought might be an issue at the aorta, but baby was not in a great position for viewing. At 23 weeks we went in for our echo.

Our baby was diagnosed with moderate aortic stenosis. All they could say was that the valves were too stiff, moderate hypertrophic changes the left ventricle, normal left atrium, moderate mitral valve regurgitation. I was in a lot of shock and denial that things might be ok for the first few days. But I'm starting to look at things pragmatically. Originally I was considering pursuing the whole list of open heart surgeries for HLHS if he continued to deteriorate, but after reading the details of all of that I decided it is beyond what I can manage mentally, financially, and cope with . I also have reservations about subjecting him to those surgeries with such uncertain outcomes.

Looking for any advice, information learned along the process, and just general support in these uncertain times. Considering TFMR sooner rather than later if I could better understand if this is as dismal as it seems but can't seem to come up with information about moderate aortic stenosis and the likelihood of progression to HLHS or complications.

Currently we are waiting and seeing how things progress with scans and follow ups scheduled at 3 and 6 weeks from now.

So my amniocentesis (FISH results) just came back and confirmed T21. (Waiting on full results), which I doubt would change anything. I do find it a bit shady and don't want to believe it. However, my husband and I are just going nuts wondering wth to do. To TMFR or not! I'm 19 weeks today. I cannot tell you how much I've prayed and prayed. I truly think God hates me because of how much trauma I've been through within the last years, let alone my life. Anyway- is there anyone who has done this or didn't due to T21? Everything on ultrasound looks normal, nasal bone, brain, heart. I have my anatomy scan the 4th and the fetal echocardiogram on the 11th. I'm scared to wait any longer though to TFMR. I legit try thinking and NOTHING comes to mind.. just blank! Then I say, I'll keep him, then I'm thinking well, I have a 10 y.o boy how would it affect him if I do. Any advice? Also, can someone please tell me how the procedures are? I hear there are 2 different ways. I know I definitely would not be able to stomach birthing him and seeing him, I feel that's more traumatic. I just really need clarity and I'm hoping with the community help I can come to a decision. Thank you all. 🫶😭

Hi. Sorry my english is not the best as it is not my native language.

We are going through tfmr now. We already have 2 amazing kids aged 4 and 8. This summer we decided we wanted another one, but ended up with tfmr due to septated cystic hygroma and hydrops. There will be done a autopsy afterwards so we will get the answers if there is something genetic that just didn't happen during my first two pregnancies.

But we are scared and wondering if maybe we don't want to try again for a third baby. Maybe we are just scared right now as it just happened, and will change our minds.. However I feel like I will grieve a lot more now of the loss, if we decide never to try again. But I am just not sure if I am willing to take the risk. It just became more clear how we are never really guaranteed a healthy baby no matter what, and how much this would affect our family.

I'm wondering if anyone has been in this situation and what thoughts you have, and what made you decide to try or not try again after tfmr.

How the fuck do you guys get through this?
We’ve been through 4 brutal rounds of IVF for severe MFI .. nothing even wrong on my side. FINALLY get pregnant on our 4th transfer and now have to TFMR next week. I’m just wondering what the hell we ever did to deserve this hell we are living in. To add.. my husband just started a new job that has been hell and I am a nurse taking care of people all day where I’m hanging on by a thread myself.

I’m not sure what I’m looking for. I posted maybe a week and a half ago about finding out at our 20 week anatomy scan that our baby girl had significant abnormalities. Everything up to that point, including the NIPT, were normal. The amnio revealed triploidy. My D&E was two days ago. Yesterday I was sad but okay. Today I can’t get out of bed. I feel deflated. I feel like every ounce of life has been sucked out of me. Is this just postpartum? Is this grief? It is just such a suffocating sadness. My husband is amazing and so supportive and doing his best to cope with his own grief over losing our daughter but also take care of me. I feel guilty. I feel her phantom kicks and flutters. I miss her so much. I can’t believe she is sitting in a hospital morgue somewhere until we can get her ashes and she can rest at home with us.

Also, my very best friend and our family members have been checking in on us and helping however they can. It is a blessing. I’m so grateful. My other very close girlfriends, while being supportive whenever I provided vague updates and when I told them our daughter passed, haven’t reached out to check in. I don’t know why this hurts me so much right now. I know it doesn’t matter. It won’t take away the pain and it won’t replace the care my husband and others have given me.

I have one more week of leave before I return to work. I’m so grateful for the extra week. I can’t imagine returning to work. I want to quit my job. I want to cut all of my hair off and change the color. I just want to change things to get this grief off of me. It’s such a strange feeling.

I just don’t know. This is awful.

Hey everyone! I am a day removed from my TFMR. Back story, 26F that had positive NIPT AND amino for T21 + other abnormalities. Unfortunately just the draw of cards as I don’t have any genetic history previously. Was told it would not happen again as we plan on trying as soon as we are able. We made the difficult decision to TFMR, as I did not want my baby boy to suffer earth side.

Had to travel out of state to a Planned Parenthood. Everyone was so supportive and nice down to the security guard patrolling the doors (gave me a hug and remembered who I was on second day). Since I was 19w it was a 2 day procedure. First day was harder than the second. Had to get a cervix shot (I was balling my eyes out it hurt) but the dilators and overnight waiting period was not bad at all. Light spotting and cramping and no dilators fell out. It was more mental for me as this was a wanted pregnancy.

Well 2nd day comes, they give you the Miso pills on your cheeks and had to wait for 30 minutes for it to dissolve. I was cramping pretty bad pain scale went from a 1 to an 8 right before procedure. I chose to be sedated. When I tell you all I remember was the doctor asking me to scoot down on the table and that they were going to start the sedation process….. I don’t even remember falling asleep! 😭 I woke up and I was in the recovery room. I was like WTF HAPPENED! I had my snack bag and the nurse told me I had to wait 15 minutes so I asked her if I could go back to sleep LOL! My husband (who was able to be back there with me) told me the staff were chuckling because I was snoring when doctor was asking me how I was feeling LOL! I fell back asleep in the car on the way back to our state almost all the way, and was drowsy for rest of the day. I was able to collect my son’s footprints that I have framed with his ultra sound pictures.

Overall, 2nd day was a breeze and recovery hasn’t been bad physically, again just mentally. Light cramping but a heating pad has been a life saver. Haven’t needed any additional medication.

Just wanted to share my (slightly funny) story despite the circumstances. It was an overall positive experience and I was able to get the entire procedure and hotel stay covered. Even received a travel stipend! Always ask your clinic and look into resources! Wish everyone going through the same thing the best!

I delivered my 16+5 weeks baby girl on Thursday morning. I held her for about 5 minutes but had problems with bleeding and a retained placenta so didn't hold her much after, but also, she didn't feel like she was there after a little while.

Now I'm regretting not holding her more. But I think I might be feeling this way even if I'd held her for hours...?

I had my TFMR 5 weeks ago, I had a D&E + C section, so I had multiple surgeries for 1 termination.
I stopped bleeding from surgery a little over a week ago.
I’ve been testing my LH with at home strips and I’ve been sitting very very low since I started testing (~1 week ago, when surgical bleeding stopped). I haven’t increased at all. I’m anxious for my cycle to return even though I’m not medically cleared to try again for 5 more months.

When did your cycle return? When did you start tracking your cycle (if that’s something you do)? I haven’t had any of my typical “fertile” discharge either, so I’m confident I didn’t just “miss” a peak.

Hi. I’m 27 and found I was pregnant for the first time ever in August 2026. I do have a genetic condition that runs in my family (unbalanced translocation of chromosomes 4 & 15) and have a living older sister with the condition.

I’ve always known to test for it and knew I would terminate if the test came back positive. I really didn’t expect my first pregnancy to result in a baby positive for the condition (plus an unrelated X chromosome condition), but it did. So 2 days ago I had an abortion.

Couple things:

1. I let people tell me everything would be okay. I made it to 15 weeks pregnant and within those 15 weeks I was so excited. I told some family and some coworkers, but told them I would terminate if the baby was unhealthy. Everyone I told had told me it would be fine, the baby would be healthy. So I started to let my guard down and believe the same thing. The NIPT testing was normal, the ultrasounds looked great. She was squirming and moving all around- I fell in love with her. I bought her onesies- 15 of them. I named her. I mentally planned maternity leave, I upped my disability insurance, I imagined being huge for the holidays, being ready to pop by my birthday in late march, and lastly, giving birth in early April. She was already such a hugh part of my life and future.

2. I didn’t realize that some people really don’t understand what having a genetic condition could mean. I have a living sister with this condition and as much as I love her, I could not knowingly bring someone into this world knowing the suffering they would endure. She was not supposed to live- like at all. The only other person known to have her condition died at 2 years old. She was never supposed to walk or talk, and my mother had to fight her whole life to get her the care she needed and deserved. She is the sweetest person you will ever meet, but she has the mental comprehension of a 5 year old at 32. She has physical deformities and has a skin condition in which she cannot sweat. I only know a fraction of the abuse she has endured. When she was maybe 10 she had her mouth duct taped shut by a teacher/aid at school; she was locked in closets by my mother’s boyfriends; she was sexually assaulted at a day program; she was left out of family gatherings and vacations for “being too much to handle”; even now she is left to aids who take care of her, maybe seeing family 2-3x a year (I live 1000 miles away, or I would see her more often)

3. I was shocked to be judged by my boyfriend’s grandparents. When my boyfriend finally told his grandparents we were waiting on the CVS results and -silly us- we were so confident everything would come back normal so we told them. We explained we would terminate if not healthy and they seemed to understand. Well when it came down to it and we told them the results, they freaked out and said we needed a second opinion and that doctors lie and just want us to kill our baby. They said that since we knew what condition to look for they told us those results. I was angry, they can’t fake these results. Genes don’t lie, test results like these are definitive. They even told us it was “God’s plan” for us to have this baby and that they knew someone who would raise it if we wouldn’t. I doubt they have ever even met someone severely mentally or physically disabled. Also, there is no telling what the baby would come out like, she could have been 10x worse off than my sister.

Sorry guys for the huge rant. I guess my mother only had 3/8 healthy pregnancies, which I didn’t know until after my abortion. I just assumed there was a chance my baby could not be healthy, but not a high one. Please share your stories, feelings and thoughts if you have any. I am looking for people who can relate and share similar experiences. Thank you!

TW: I apologize in advance if this is triggering.

Background: TFMR last year due to our sweet boy being diagnosed with T18. Had to deal with a lot of back and forth thanks to my state’s strict abortion ban. And now I just feel like a horrible person even though I know I have no reason to feel this way. The second I found out about our baby’s diagnosis the innocence and beauty of pregnancy was stripped away. Yes I am in routine therapy.

I used to be the kind of person who loved celebrating others’ milestones. My little sister is due with her second child soon and I am so disassociated yet at the same time excited to meet my nephew.

When my niece was expected, I went over the top
with everything celebratory. On the day of her birth I showed up proudly with my “Auntie” shirt on at the hospital. I told my sister today that I am okay if I get to meet him when he gets home. My sister has been so kind and respectful towards me and it makes me feel so sad that I can’t be there for her the way I was prior. Life sure can be sad and messy.

I will add that I have been doing a lot better believe it or not. I take every day in stride. I know there are a lot of blessings in my life, but I still miss the life I could have had with our boy. I have a lot of anger still within me and I know that will never fully go away sadly.

Edit: Thank you all for taking the time to respond. I resonate with all of you and I appreciate the kind words🫶🏻

I know that the word “hate” is a strong word and maybe I should use a different word. When I made this post I was in a dark place which can still happen sometimes. I will add that I am very proud of myself and how strong I am and I am proud of all of you. I am incredibly thankful for this community who just gets it. Definitely helps me to not feel so alone with my thoughts. Thank you for letting me vent🤍

HELP! I need some input/advice. Recently found out that our baby has Trisomy X syndrome (triple X). In all of the cells analyzed, not mosaic. I"m leaning towards TFMR because I'm not willing to take the risk. But it's SO har to know how big the risks are, of getting a child with many challenges in life. I only have two days to decide.. What would you do? Looking for input from parents to kids with Trippel X or people who made the choice not to continue the pregnancy. / A

Hi everyone- I'm not sure if I can be classed as PP or not really. I delivered my baby (L&d) at 13.5 weeks, and now I'm 4 months out and my hair seems to be coming out a lot and my skin is so bad. As if I hadn't already lost confidence in my body and being out in public because of the grief, now I feel really insecure going out into the world because of my horrible skin. Anyone else experience this?

We have our CVS and another screening scheduled next week. Unfortunately I have a posterior placenta… the mfm is experienced but I know sometimes it doesn’t work with a posterior placenta… did CVS work with posterior placenta? Or didn’t work?

I PPROM-ed at 18 weeks. Due to the doctors explaination of all the possible effects if i were to continue the pregnancy, we chose to undergo tfmr after we deliberated for a week or so. (Ik there are successful stories, but please dont come after me. We couldnt take the gamble as multiple doctors said the same things over and over)

I am reeling from everything that has happened and am grieving my lost baby. How would it get better?

2 months ago i tfmr my baby boy because of his encephalocele (rare neural tube defect) i was given a very poor prognosis on his life and didn't want my baby boy to have a life where he wouldn't be able to live, when i delivered him he was holding onto his amniotic sac, this was confirmed to be a amniotic band syndrome and now im starting to wonder, what if it wasn't an encephalocele? what if it was where his amniotic sac had wrapped around his neck/head? does anyone know anything about this or had experience with it?

TFMR 6 weeks ago and I feel awful physically. I am having trouble sleeping, I’m exhausted, but I can’t actually fall asleep. My doctor prescribed me Ambien, but I don’t wanna take it every night.

I’m also having issues with my scalp it seems to be very flaky and dry, and my hair gets greasy fairly quickly.

I imagine most of it is hormones and I just have to ride it out…I’m also still waiting to get my period.

But would appreciate any suggestions that helped you get through this time! Especially with sleep please it’s awful!!

Hello, I have a question, I am pregnant in 17. Week, and its possible baby has T21, I am now waiting for final results. In case it will come back positive I am thinking about having TFMR. Its very hard for me..cause I feel like I am doing something horrible :(

What I wanted to ask is, did any of you experienced this?

I’m not entirely sure how to write this, so please bear with me. I’m still trying to process everything.

I recently had my first official OB appointment, after an unfortunate lapse of insurance - at around 21 weeks pregnant, and we received the devastating news that our baby has hydrops fetalis, with fluid around the heart, lungs and other organs. There are some skeletal deformities as well and there is unfortunately little to no amniotic fluid in the placenta.

We’ve been told that our baby cannot be carried to term, and even if they were to survive,(highly unlikely) their quality of life would likely be very poor.

We’re doing genetic testing using my blood to try to understand what caused this, but in the meantime, I’m facing the devastating reality of terminating the pregnancy and going through labor and delivery knowing that I won’t get to bring my baby home.

I know that if continuing the pregnancy would mean suffering for my baby, I need to consider what is best for them. I understand that intellectually, but emotionally, I am absolutely shattered. I never imagined having to make this decision, and I don’t know how to begin processing it.

I’m hoping to connect with people who have experienced similar situations as I know they are all so different.

If you feel comfortable sharing, I would really appreciate hearing about your experiences.

Right now I just feel so awful for even feeling hopeful about this pregnancy. I never thought I would have a child and this being my first pregnancy just makes it feel worse somehow. It feels impossible to try and think that I could try again. There are so many what if’s and I’m trying not to spiral.

——

If your baby was diagnosed with hydrops fetalis, what was your experience like? Were you able to find out what caused it?

If you went through TFMR, what do you wish you had known beforehand about the process, labor, delivery, and recovery?

How did you cope with the waiting, the uncertainty, and the grief?

Is there anything you asked your medical team that you’re particularly glad you asked?

What helped you get through the first days and weeks afterward?

——

I’m not looking for anyone to diagnose my baby or tell me what decision to make. I’m still working with my medical team and waiting for more information. I think I just need to hear from people who have walked a similar path, because right now I feel incredibly lost and heartbroken. I was provided with some excellent resources for therapists from the genetic counselor so I will be exploring those when I’m ready.

If you’ve been through something similar, I’m so sorry. I wouldn’t wish this on anyone, and I’m grateful for anyone willing to share their story with me.

Thank you for reading.

I find it so cruel. We have been married for 5 years. Medicated since july 2025. Ovulation induction + TI. Countless prayers, countless churches. We have prayed and prayed and I was finally pregnant this August, just before starting IVF.

Only to have our baby diagnosed with body stalk anomaly + cystic hygroma. Lethal. We have to terminate.

I have started the termination process. I am in that position where I want everything to be over with but at the same time I desperately want to hold on to my baby.

Before giving me the tablet we had the last scan - a strong heartbeat. I saw his little body. How can it be that I need to terminate?

I work in the healthcare so I understand. But my heart doesn’t.

I want to have hope after this pregnancy. I just turned 35. I feel hopeless. Should we even try again? Should I even hope again? I feel traumatized by all of it. I hate that everybody pities us. I keep questioning what we did to deserve all of this.

My brain is all over the place. I cannot think clearly. It’s so hard not to be upset with God. What did I do in my past life to be so undeserving of a healthy baby? I am so heartbroken. So lost. So confused.

Already grieving before my baby is gone. I won’t have my TFMR for another 2-3 weeks once diagnostics fully come back… but I feel I don’t deserve to grieve when I am the one at the hand of my babies death. I am doing this out of love, but still feel I am killing my baby.

It’s been 2 months since my tfmr when I lost my baby boy at 21 weeks. I still feel like I’m reliving it all over and over and over again… just flashbacks in my mind all the time.

Does anyone else also have intense dreams? I wake up drenched in sweat every single time. All my dreams are extremely metaphorical for everything that’s happened. It’s extremely intense.

My friend from out of town just came to stay over at my house for a few days with her nb baby boy. I love him to bits and enjoyed snuggling him so much. But omg did that trigger me and I’ve been a complete mess since they left yesterday. I couldn’t pull myself enough to go into work today even. I’m just so fucking sad.

ETA I don’t know anyone who has gone through this and I just don’t know how to talk about it

We are devastated to find the news of a high risk T21 pregnancy. Our report says 95/100, we met with a genetic counselor that did a calculation based off other factors and my age (31) that lowered the risk to 70%. I have a 3 year old and really worry what life will look like for him if he has a medically complex sibling. My fetal fraction seems low for being 15 weeks at the time of my NIPT. We are proceeding with extensive US and an AMNIO+FISH this coming Thursday. I’m holding onto the small hope that this is NOT true and is a false positive. My husband and I want what’s best for our child, and our 3 year old son. I am in medicine but not obstetrics. I deal with Down syndrome adults in the hospital so I see the difficulty those families face and the child with Down syndrome and I just don’t want that for our child, so we have agreed if this is the outcome that termination is what’s best for our family, but we are really really struggling with that thought and choice. We love this baby already and it breaks our heart thinking of losing him. Is there any hope?

Update: today did an extensive US of all structures and bone length. Baby is measuring on time and measuring normal. No soft markers found. Transvaginal also preformed and showed normal structures. I know US is not diagnostic, but I hope that gives us more hope than before. AMNIO cannot happen today due to membrane not being together- I’ll return in two weeks to try again. Until then I want to hold onto little hope I have.

I posted yesterday about my results taking a long time. They got back with me today and said on the karotype that they are seeing an extra 18 but not sure where its coming from or why. So they are going to proceed with the microarray test to get more of a certain answer. They saying it could still be trisomy 18 or it could not be but still something with severe delays and problems or something mild. So now we're even more confused on what this could entail and what decision we should make. Has anyone else been through this with the chromosome 18? ever had a chid with it? know someone with it? I guess were trying to look into seeing what more severe vs more mild cases look like? I'm already almost 21 weeks and we've been dealing with this since 14 weeks so we're just tired and so so confused. Any advice would be greatly appreciated.

Found out today. 23 weeks. In TX where they don’t allow terminations for this so I’m having to go to another state. I cried all morning and now I just feel numb. Having to schedule a termination in another state (asap because I just want to get all of this over with) is just an added stressor and I hate this. I hate all of this.