I have not had a TFMR but currently in limbo with finding out if our baby has Trisomy 13.

I am religious and notoriously have been very pro-life WITH my own personal choices. I became unexpectedly pregnant and my boyfriend and I are moving towards marriage and engagement shortly, then we got our screening back. There is a possibility our baby will have this condition.

T13 is extremely fatal and I feel so much guilt about the possibility of deciding to terminate. But what is worse? The pain of the baby’s short life? Is it selfish to continue a pregnancy that isn’t viable? What if my baby survives and they are left with years of pain and suffering?

I have tried to turn to God for answers. I am getting an amniocentesis and have no idea what this next chapter looks like. My partner is also religious and emphasized that it was my choice, and he also is questioning our route as he mentioned “I don’t even know if keeping a baby who has this much pain is worth it”.

We are both young. I am 22, he is 25. We are healthy. This feels incredibly unfair. Even if it is a false positive, I feel like my pregnancy has become tarnished by this newfound fear.

For anyone who had hope and was crushed and decided to TFMR, what helped you make your decision? Did you consider carrying? How did your religion fit into that decision?

I am so, so frustrated. I have an appointment a week from now at DuPont. I’ll be 26+6.

They called me yesterday to say that the cost of my appointment has increased due to my ultrasound records saying the baby was measuring ahead of my due date. It’s only by a few days but of course, that puts me in the 27 week category.

I had already called the funding places last week, explained my situation over and over again. I thought that I was done. Now I have to do it all over again to try to get the funding increased and I’m just so sad. It’s nobody’s fault, I am so appreciative for the help I’m receiving, but every phone call I make just feels like an awful reminder and like I’m ripping the wound open over and over again. I just wanna crawl in a hole. I’m so stressed over this entire thing.

Just needed to rant for a second. Thank you for listening.

Today marks the day mine and my husband’s world fell apart.

A year ago today, we went for an emergency scan after I’d been in A&E the day before, being pushed from pillar to post because I was having cramps. I never actually got an answer as to what was causing them, but I’ve always assumed it was round ligament pain.

During that scan, the sonographer noticed that our daughter’s heart didn’t look quite right and referred us to fetal medicine. That’s where we found out she had HLHS and an unbalanced AVSD. Her condition was so severe that the consultants were concerned she wouldn’t qualify for surgery.

We made the heartbreaking decision to TFMR, so that she would never have to experience the pain or suffering that her condition could have caused her.

This day has hit me so much harder than I expected. I feel like I’m reliving every single moment of that horrific month. I actually hate September.

I cried the whole way to work this morning, and now I’m sat in my car about to leave because I just can’t cope. I work in a hospital, and my department is literally right around the corner from where I had that first scan before being referred to fetal medicine. Being here today feels like being right back in that moment, and there are just so many memories attached to this place.

I’m not really sure what the point of this post is. I find all of this incredibly hard to talk about with my friends and family. No one around me really understands, which I completely understand too, because no one I know has experienced anything like this.

I think I just needed somewhere to put all of these feelings today.

If you got this far, thank you for reading all of my waffling. ❤️

Sending so much love to everyone who has been through this, and to anyone currently going through it. ❤️

I am wondering how anyone survives this awful nightmare.

I have known for 2 weeks that my baby has serious heart defects requiring open heart surgery, is currently growth restricted and the window is narrowing for options and results due to how late this was diagnosed (I am currently 22w6d). I wanted to push back the amnio till after viability as I am terrified at the prospect the amnio causes my waters to break and I deliver a non viable baby whose amnio might be genetically clear and their heart operable. So my plan was to delay the amnio by a little but not a lot. However, my doctor will only support me having the amnio before 24w or after 32w to avoid a scenario where they have to deliver an extremely premature infant with heart failure too early to have a good outcome. My doctor seems less worried by me miscarrying at this gestation even though it would involve full labour and be genuinely devastating, but the law doesn't count it as a stillbirth yet, only in a week's time. If I miscarry before 24w or TFMR it makes me so angry that women are not even eligible for maternity leave/pay. But in a week's time I would be.

Anyway, I thought maybe I was okay delaying the amnio to late pregnancy but my doctor planted a seed that my baby might have Edwards syndrome and die anyway despite my screening being low risk (less than 1 in 5000). So now I feel like a walking tomb to continue the pregnancy to term without genetic information and increasingly I feel trapped in my body like some sort of Handmaid.
I booked the amnio tomorrow and the baby is kicking so much tonight :( I am terrified it is potentially our last night together if the amnio goes wrong or the results reveal something awful. I can't believe this is my life.

When my doctor was talking about the feticide process I wanted to ask if there was an option to put me down with the baby as I know it's dark but I just don't want to be here anymore without my baby. I already lost everything in my life when I made a decision to continue this unplanned pregnancy after infertility (my job, my partner, my financial security, my health) and now I can't bear the thought of living through this purely for the sake of not hurting loved ones and the risky hope but not guarantee that things get better. I am so traumatised.

I know i am going to have to announce that the baby died on social media since I had announced the pregnancy at 16 weeks about a month+ ago. What did you say? Did you mention the birth defects at all? ​

I'm nowhere near ready to try again, we are just 5 days post-tfmr and I am definitely not emotionally (or physically, obviously) ready yet. But prior to our tfmr, my partner and I discussed trying again.

I am very afraid of something happening again - my mfm said it would be extremely unusual for two full T18 babies in a row but there are a lot of different life limiting conditions I'm learning about, not just T18. I'm just so worried about it happening again, especially because 1. I'm already 37 (going on 38 in September) and I keep reading about higher risks with "advanced maternal age" and 2. the doctor who helped deliver my beautiful girl during my induction last week said I shouldn't try again for at least 6-12 months... I had no idea the uterus would take so long to heal...

For reference, my tfmr was at 18 weeks and I'm at risk for RPOC - currently just keeping an eye on things per my care team. I had an ultrasound done two days ago due to running a fever off and on for a few days but the ultrasound only revealed *possible* RPOC that are too small to determine at this time.

Obviously there's too much going on during my physical and emotional healing that I shouldn't even be thinking about this at all. I wanted this baby so badly and now I'm worried about damage and scarring to my uterus and waiting too long to try again and being too old and losing another child. I can't even grieve properly because I feel like there's a clock ticking... and I never even believed that maternal clock existed starting at 35 years of age until I learned about my daughter having T18.

Just looking to be heard and wondering about others' experiences with trying again after tfmr. How long did you wait and was it because of doctor's orders or personal emotional/physical journey or both?

My luck was so bad this pregnancy at 37 years... I'm terrified of waiting 12 months when I'll be 38 going on 39 to try again. I'm so worried that the risks are only going to increase.

I’m 7 weeks out and I’ve entered this new phase of the grieving and healing process where I have this drive to ‘get myself back on track’.

After months of emotional over-eating, I’m focusing on healthy food and exercise.

I’m using my resources for mental health support.

I’m slowly getting back to work.

I’m meeting up with people and attending social events.

I’m cleaning and reorganising my house.

I’m taking care of my LC and try to be a present mom.

I’m making to-do lists and try to be productive.

I’m trying to get back into a normal and healthy routine.

But man, this is hard. I’m being thrown from feeling overly optimistic to feeling like a complete failure when I don’t manage to do all this stuff that used to be just normal day-to-day life.

I know it takes time but I guess I’m having this realisation that it will take a looooong time. I’m getting impatient. I just want to feel normal again.

Anyone who can relate? How are you managing your expectations in recovery?

EDIT: This is actually my second TFMR. I recognise this from the first time. I don’t remember any strategies or helping thoughts though. I hate to go through this phase again.

Had a high risk NT last fortnight and high risk NIPT come back last week. Hospital booked me in for an amnio today.

Based on my scans I’m 15+2 but the doctor was insistent they go by period dates which show me as 14+6, so she refused to do the amnio.

I am so frustrated because that the hospital didn’t confirm how far along I was with my period dates before my appointment. They just asked how far along I was. I went with my scan dates cause as far as I was concerned they’re the most accurate.

The doctor said they could only go by the scan dates if it was more than 5 days different from my period dates.

Am just so annoyed. My husband and I both took time off work, plus a whole day of anxiety and stress to be told come back another day. So now it’s another day of stress and anxiety for the appointment plus extra time to wait for results.

We have this big decision of TFMR hanging over our heads that is so heavy and it’s such a weight to carry.

Hi friends. I would just like to know if any of you sometimes have the same struggles as I am having right now. I am 32, no children apart from my TFMR in November of 2024. After MUCH thought and consideration, my husband and I decided to terminate via D&E at 17 weeks. Hands down the most awful, gut wrenching day of my entire life. I did so much research, and so much of that research led me to a generally low quality of life for a person with DS. I of course read about the “success stories”- those of whom go on to lead mostly normal/low support lives but those were few in the face of all the other cases of people who would need life long, high support/care (not to mention those who would be victims of life threatening medical issues like heart anomalies) It’s been two years and I know I made the right choice for ME but today I came across a video of a woman with DS who is so intelligent, low support needs, and thriving. She created a federal bill that prevents discrimination in providing life saving organ donation to babies/children/adults with Down syndrome. This video then led me to even MORE videos and stories of people with DS who have such fulfilling, low support needing lives and it was honestly more than I thought. So now I’m sitting here and I am just beating myself up over my choice I made two years ago. What if my son would’ve lived a mostly normal life? What if he would’ve been “fine”? This is such a shitty feeling and I don’t know how to get past it. If anyone has struggled with the same feelings of guilt, please let me know I’m not alone in this.

My daughter just found out that her baby has spina bifida. Went for a gender reveal scan, and the sonographer sent her straight to the hospital for another scan which confirmed the diagnosis.

The prognosis isn’t looking good. She’s got an appointment on Friday with fetal consultant but we are expecting the advice is going to be TFMR. We are heartbroken, this is a much wanted, longed for little girl, a first pregnancy.

How do I support my daughter and her partner through this? I have promised her whatever she needs I will do.

Please tell me what helped you if you have been through this. If I could take the pain she is going through onto myself I would.

September 28th marks 2 years since I delivered our sleeping boy at 30 weeks.

Since then I have had another son, he will be 1 in October.

Might just be that I'm on my period, but I am just feeling so anxious and emotional lately, like it is increasing as September goes along.

There is a metaphor that Aubrey Plaza spoke about with grief being like a giant gorge at the edge of a cliff. I am feeling that right now for sure. Ill try to post a link in the comments because it really spoke to me.

Did anybody start to come to an acceptance of their TFMR and still get sad here and there but didn’t cry as much anymore and started to be able to function a little normal again?

I’m in this weird phase where I think I’m coming to an acceptance (there’s still a what if) but I keep thinking I did potentially save my baby.

The first week I couldn’t get off of the couch , I would force myself to sleep from 9 am - 2pm (when kids were at school) , I could barely eat, I was crying all day non stop, I felt like my body was in fight or flight mode, I couldn’t see anybody not even my mom because I was afraid to be around people, I couldn’t go anywhere, etc.

This week I feel like I’ve come to an acceptance, I can actually get off of the couch for longer periods, I’m cleaning a lot, I can’t really cry I feel kind of numb, I do cry here and there but I’m able to control it a little bit better, I’m able to look at my sons 3D ultrasounds now and smile (with small tears) , I can change my clothes and go to the store, I like to keep busy on the weekend.

Idk if this is a normal part of grief like a “high” period and then it’s going to get worse again?
I have no idea but did anybody come to the acceptance , able to control your crying more , and slowly ease back into things you once enjoyed ?
I still can’t sleep at night I am up until like 4am

I want to start working out again, I’m 2 weeks out, clinic told me I can at 1 week but to listen to my body, I feel like working out again will also help mentally because that’s something I loved to do before being pregnant..
of course I miss my baby so much everyday , I always think about him I look for signs of him everywhere , everyday ❤️‍🩹🙏🏼✨ but I’m able to function a little better .
It hits me at night when it’s quiet and when I’m alone but I just want to know if how I’m feeling is normal I know everyone grieves differently but anyone have a similar experience ? I want to start working out again but a part of me feels guilty and I also feel like people are going to mistake it as I’m “not” grieving .. I know I shouldn’t care about what others think but it’s the guilt in my head..

As the title says: is Whole Exome Sequencing (WES) possible for embryos? I have existing embryos that have been PGT-A tested and need to be PGT-M tested for a new condition we just learned about. We lost a pregnancy to a de novo (spontaneous) condition recently and are eager to see similar results in our existing embryos, if possible. Any insight would be much appreciated! I have a note out to my doctor too but she is quite slow to respond. Bonus points if you happen to know for Igenomix specifically. Thanks!

I don’t know if you need a TW for LC …

I have 2 children. our third we chose to Tfmr 2 months ago. I thought I’d never want to try again but right after I had a strong desire to and i still do especially right before ovulation. my husband said he isn’t ready and pretty sure he won’t ever be. he could barely even say the word abortion and can tell he has a lot of guilt and it sounds like he doesn’t even want to risk that happening again. I am so devastated. I’m 39 and the uncertainly and every cycle that passes even if it’s been 2 is just so hard. I don’t even want to be intimate pregnancy isn’t on the table and I’m mad and sad and hopeless.

This weekend I went out to an event for the first time since my procedure six weeks ago. I had way too much wine and ended up talking to a girl I knew through mutual friends for a while. I drunkenly told her I had just terminated my pregnancy and that my life is a disaster.
I woke up yesterday morning with horrible hang-xiety. I cannot believe I told basically a stranger about my tfmr. She was sooo nice about it, but omg I am embarrassed.
I’m realizing that I am just not emotionally stable enough to be going out, drinking, and interacting with others. This horrible thing that has happened to me is just always sitting right below the surface, ready to boil over.
Has anyone else had negative experiences with going out for the first time/controlling yourself with drinking? Or have you ever handled this situation in a bad way that just added to the overall anxiety you already have?
Looking for reassurance that I’m not alone in feeling so socially awkward.

Edit:
And yes , I think the main problem here is the drinking, lol. I definitely need to avoid the wine in these types of situations! Thank you all for your help and support❤️

Hi everyone. I am feeling incredibly devastated and hopeless.

I’ve had two TFMRs before for severe CHDs incompatible with life: HLHS in 2022, and then SV (single ventricle, only two chambers visible) in 2023. In my current pregnancy, we’re again suspecting HLHS at 13 weeks: asymmetrical heart chambers, non-visualized ductus venosus, single umbilical artery, and a hypoplastic nasal bone. Risk scores came back at 1:62 for Trisomy 21 and 1:65 for Trisomy 18/13. A second opinion confirmed the same suspicion. I have one more ultrasound at 15 weeks, then an amnio. If it’s confirmed, this will be our third TFMR.

I’m in my early 30s and have Ebstein’s anomaly myself, a congenital heart condition. My husband has no known cardiac history. We’ll do karyotyping and WES, and then perhaps consider IVF with PGT, but I’m so so scared to even think about the possibility of going through another pregnancy.

I don’t know how people survive this. I don’t know how they find the strength to keep going and keep hoping after loss after loss over and over

Coming up on 1 year post TFMR and I am definitely feeling a bunch of emotions. We honored our little boy’s due date by watching the sunrise on the beach, exchanging words and prayers, and we sealed his urn shut. I am wondering what others do on the TFMR anniversary. Definitely will light a candle and say some words and a prayer. I know it’s okay to even just sit in silence, but I want to do something more. I can’t believe it’s almost been a year.

[TW: LC]

How do you all deal with pregnant women/seeing pregnant people, especially if they are in the context of having the age gap you wanted?

I have kind of learned that pregnant people will be out and about in life, like at the grocery store, etc. That part is still hard.

But what is killing me is seeing them in the context of the age gap I wanted. My toddler goes to a gymnastics class for 2-3YOs weekly and it is FULL of pregnant moms. I wanted a 2 year age gap so badly. Best case, and this is if we are extremely lucky, we'll have a 4 year age gap. It almost feels arrogant that these women get to go out and enjoy their toddler and pregnancy and age gap. Even if they don't say anything about the pregnancy for me, it kills me for days.

I am so lucky to have a LC and I love her so much but going to these spaces CRUSHES me. So I don't go. But these sightings are to be expected anywhere I take her - the playground, gymnastics, preschool, etc.

It feels terrible to not play with her and even worse to go. Help!

I am currently sobbing for the first time in a few weeks since my tfmr in April. My due date was September 16th & I’m dreading the start of the month. I truly don’t know how I’m going to make it through if I’m already so emotional before the month starts. We have been TTC & are on cycle 3 & I just feel like this is all so much to bare day to day as I may or may not be getting my period end of week. We have a road trip planned with few friend’s of my husbands and I’ve been absolutely dreading it because if my period starts I’m sure it will hit worse than the other 2 cycles. They aren’t my friends and 1 of them knows about the pregnancy (we didn’t announce). They are really loud & love to laugh and I don’t know if I can be that way. I don’t even know what to do to honour the day. Coincidentally I have an ultrasound that was scheduled for that day after I asked my doc for to check in after d&e (no symptoms of scarring just wanting to check in if 3 cycles & nothing yet). I am a bit scared to get bad news since I’ll probably already be sad. I guess I’m asking what you all did or plan to do to take care of yourself during the month you were due?

My wife is terrified of a medical termination.

We have decided to terminate for medical reasons, but the only method apparently offered in Scotland is through NHS Scotland and is a medical termination. My wife is terrified of the thought and has all these pictures in her head of a traumatic experience seeing the baby etc. Are there any alternatives to the tablets in Scotland such as a surgical termination? She has it in her mind that she goes to sleep and then wakes up and it's over with, which seems a lot less traumatic than giving birth to the child. Is current at 16 weeks. Please any advice or information thank you.

I am 3 days post tfmr. this was my first pregnancy. my baby was diagnosed with bilateral multicystic kidneys. I am absolutely heart broken. At times I’m ok, and then I just burst into tears. when I think about “what could’ve been”, I just break down and cry. I get triggered when I see baby posts on social media or when I see people that I know are announcing their pregnancy. I know I should be happy for them, but I get so triggered. I have gotten off social media to avoid this. I am 34 and will be 35 in June. I can’t help but feel this pressure on me now after my TFMR. My age wasn’t something that I thought of when I first conceived, but can’t help to think about it immensely now. I was one of the “lucky ones” when it came to my preganancy. I had no morning sickness and had almost no symptoms. I only really felt pregnant two weeks before my tfmr when I started to show a little. I feel so sad all the time. I know it will take time. I miss my Remi

I had to do have a TFMR selective reduction on one twin due to a cystic hygroma. It was terrible and happened at NYC at Christmas time.

My brother decided to blind side me at lunch that they were going there for Christmas. I had a PTSD moment and started giving them suggestions?! Wtf all I could say was don’t make this about me in my mind was giving the benefit of the doubt he wasn’t thinking?

I had planned not to say anything bc I didn’t want to make it about me. But now I’m angry I have done nothing but support him always.

Come to find out my mom had told him to be gentle ( she shouldn’t have to have to? He knows the hell I went through) anyways I talked to him tonight and I guess she told him which I had NOT planned on doing. I knew it would be come about my reaction not the hurt which is exactly what happened

He was yelling that it’s all about me etc. told me he’s not having his daughter not talk about her trip. I would never ask that of her! I’m happy for them! I’ve always gone above and beyond to make him comfortable. Just wish the hardest moment of my life could have sensitivity and given me a heads up. But I’m not a priority. I want them to have a wonder time. I’m not evil it was just supper triggering. I had to be awake with no drugs bc of my twin and then carry her passed until birth.

I have literally lost so many people in my life to TFMR not just my baby..when does the grief ever stop

As I prepare to TFMR I am wondering what to do about honoring the pregnancy and LO.

I know everyone is different, but my mind is so clouded I’d really like to hear how others went about this.

Did you bring home footprints? Remains? Was it too much and you opted for no mementos? Do you wish you did something differently?

This community has been such a lifeline during this time. Thank you ❤️

​

I'm writing from the hospital, since I just had to terminate my pregnancy following a devastating diagnosis of T18

At my 10w scan, the OB noted that baby's NT was enlarged (around 6mm) and it could possibly have fluid around the abdomen. I'm lucky enough that my OB is really a woman of action and within 5 days she got me an appointment with MFM. They confirmed an enlarged NT (now around 7.8) plus early fetal hydrops.

The following day I did CVS. The doctor told us to expect noonan syndrome with our numbers.

Fortunately we got our results in just 48 hours and baby girl (she was a female!!) had full T18.

This was just yesterday and it's all a blur. I was referred for ab urgent D&C today, since the law where I live would have forced me to have a L&D in 2 days.

So this morning I had the procedure and had to say goodbye to my precious girl. She was so so loved and wanted, my partner and I did IVF to have her. And we are pretty much devastated. I'm also numb, really numb.

Just wanted to get it off my chest.