TW: living children

I joined reddit more than two years ago after getting abnormal nipt results. Not much later I found this subreddit and have been here ever since.

It’s two years from the day I gave birth to our t21 boy. Time does heal and usually it’s just in the back of my mind and I’m not “actively” grieving him. After two years it’s maybe more like guilt and sadness? Like I know I did what I thought was best for everyone and I don’t regret the tfmr, bur I do feel not exactly bad but maybe selfish person, like I only chose what I chose for me. How can I say I saved our boy from suffering, because many t21 persons have a life they enjoy? I guess I just have to live with the thought that I was not ready to welcome a disabled child in our family. We have two living children and I have started to wonder what will they think of me and should they later know about this or not. Maybe they will hate me and condemn me?

After the tfmr we had one miscarriage and then a lovely healthy baby girl. We would probably want third child, but I don’t know yet if I’m ready for possible future heart break since I’m 38 already and the problems are getting more likely.

Yesterday I thought I’m going to be just fine today, but I feel a lot. I’m angry and cry easily. October is also the pregnancy and baby loss awareness month, so it’s always hard month. My baby is now sleeping and I’m typing this and crying silently. I still have the question I had when I debated whether to tfmr or not: what kind of mother I am if and when I’m willing to let our boy go?

I just needed to ramble a bit. For short: time does heal but this day is full of emotions. Hugs to everyone of you internet strangers who have helped me so much.

I’m 38 years old. Never really dared to dream to becoming a mother. I had a very difficult childhood and never really got to have a family. I was scared of birth, of loosing control. Couldn’t imagine having the fortune of safely delivering a healthy child on this earth. By the time I was 37, me and my husband of many years, decided we do really want to have our own little family and give our baby a childhood we never got. I knew I was pregnant very early and had to wait for this first scan some weeks. We saw a little heart beat and we were so happy. The next weeks were hard, my pregnancy put me in depression and robbed me of all energy in my first trimester. It was time for our NT by week 12 and this is where the nightmare began. In the first two minutes of looking at the baby, the doctor said baby seems to look like it has a cleft palate. Doesn’t look right but it might be a shadow. I was so angry, how could he?? He’s not sure and still saying this to us, leaving us in a panik. The heart beat was high. 180. That’s not good they said. My PAPP-A was too low. NT measurement were ok. The computer analyzed high risk for trisomy 13. 1:10. I didn’t believe it. I was angry with the doctor. Blamed my age for this ridiculous result. That can’t be. We did NIPT. Waited a too long. The had to scan twice they said. The good week we had to wait, we weren’t living. Came back. It’s a little girl. And high risk for trisomy 13. That week the mourning process started and I didn’t even realize till now. I cried for days, why why why. We learned so much about trisomy 13 in the next days, about next steps etc. It was so horrible, so traumatic to read and see everything. But so many false positive stories on reddit, that we held onto hope. I already said goodbye to my baby, but after days and weeks passed, I was getting so hopeful. We had scheduled a CVS appointment but couldn’t go trough with it because my placenta was behind the baby. At that appointment i cried and shook like a leaf, devastated and robbed of any hope. When the doctor watched our baby (and we did too), she couldn’t see anything wrong. The heart beat went down, it was 167 and we were so relieved. I still asked if they see 6 fingers and the medical staff laughed, thinking I was trying to be funny. They obviously didn’t know trisomy 13 or the pain I was in. The next two weeks we waited for amnio. Part denial, part such hope. Everything will be good. Two days before the amnio my dog started to look at me funny. I said to her: “What’s wrong honey, you look at me like i’m sick or something.” She preferred to not leave my side. The day of the amnio was yesterday. The doctor was an older men, very cold and reserved. He looked at my baby first and I wondered about the heart beat. Has it slowed down, is it normal yet? He said: “Mrs, the heart is not beating anymore. It should be here, but there’s no movement. We won’t do the procedure today obviously.” I left my body, I knew I can’t fall apart. I knew what was next and what will I have to go through. I asked when she died. Not long he said. A day maybe two. She measured her age. Another doctor came in, it’s a protocol they said. The fetus death has to be confirmed by two different doctors. She showed me where the heart should be beating. Where I saw it beating so strongly for weeks. Our girl was so still, didn’t move. We are used to her little hands hiding her face. The doctor said: “Looks like a cleft palate/lip there.” I’m not sleeping now. I have to take the first pill today and on Monday I’ll be induced and will give birth to my daughter. I can’t imagine having to do that. How can I find this strength? I’m scared and so deeply devastated. Why? Why? Why?

Hi.

I just had a tfmr last thursday, and I have a child who's 6. We never told him that we were pregnant, we were going to at 12 weeks but then the NT was to big(2,5-3). He's commented on my stomach being big, but we just made it a joke. The grandparents has been taking care of him a lot during this periode, during the abortion, during this weekend, and had a small d&c yesterday to get rid of some parts left in the uterus. We're so sad, but we're home during the day, and get to grieve together before he comes home from school. So I don't think he's affected of our greif.

Some people have adviced us to tell him, but we don't really want to burden him with this yet, also we don"t want him to tell people at school, and other parents knowing.

What have you've done?

I had my surgical TFMR on Tuesday the 13th, and it’s been a few days now. Physically, my recovery has been going fairly well overall. My bleeding stopped around day 3, although I’m not sure whether it might come back. The main thing I’m struggling with physically now is really painful tugging in my lower belly, almost like something feels trapped inside. I’m not sure if this is normal

Mentally, though, I feel completely numb and drained. Some days I cry so much, and other days I physically can’t cry at all. When I can’t cry, I end up feeling guilty, as though I’m not grieving enough or as though I should be feeling more than I am. I miss my baby so much, One of the hardest things for me is knowing that I had to leave my baby at the clinic. I feel so guilty about having to make the decision to TFMR, especially because I heard their heartbeat. That memory keeps coming back to me, and sometimes it makes me feel like I’ve done something unforgivable, even though I know there were serious concerns about my baby’s development and I was faced with an incredibly difficult decision.
I keep wishing I could go back and change everything. Some days I just want to disappear and never come back, to escape the pain and somehow forget that any of this ever happened. I know I can’t, but right now it all feels so overwhelming.
I miss my baby more than words can explain. I never wanted this to happen, and I never imagined I would have to make a decision like this. I love my baby so much, and I wish things could have been different.
I think I just needed somewhere to let all of this out, where people might understand what I’m going through without judging me. If anyone else has felt numb, guilty, or struggled with the days when they couldn’t cry, I’d really appreciate hearing your experiences. I feel so alone in this sometimes. 🤍

I got another tattoo this week for something completely unrelated. I was explaining to my 5yo that the ink goes into the skin, and showed her the one on my wrist. She asked what it said and I told her it was “Kaia”. She then asked who was that and why she was important.

I hadn’t told her yet about her sister. But I explained that before her I was supposed to have another baby. She gasped and said “You’re having a baby!” And I had to tell her no, this was before her. She asked what happened and I said the baby was sick so the pregnancy had to end. She asked why couldn’t the baby get better. I explained that the pregnancy was hurting the baby so it had to stop.

She’s too young to understand what encephalocele is or what an abortion does. I think she’ll understand in time why I’m protective of her and why I’m so happy with everything she achieves.

After a long 7 week wait, we finally got our results. The whole pregnancy I was so certain that I was having a boy, but my beautiful baby was a little girl! Remi was missing a chromosome number 7 which is associated to Williams syndrome which both of her kidneys were effected with cysts. Has anyone heard of Williams syndrome?

I feel like I am right back to that immense feeling of grief after finding the sex of Remi. It was such a beautiful shock. I miss my little girl so much.

I'm sure I can't be alone in this, but I feel like I'm being digitally haunted by my broken dreams of a healthy pregnancy and life with a much wanted baby boy and it just hurts so much. I joined reddit in the middle of a TFMR for a grey diagnosis at 26 weeks, and the vast majority of my searches on here have been related to TFMR and baby loss. And yet still my feed is awash with content from pregnancy, parenting, newborn and 'look at my beautifully decorated nursery' subs. I'm only 5 weeks out from my TFMR, and it's sometimes so overwhelming to be confronted with such an emotional minefield. I saw a post on my feed this morning that just had me in pieces: a mother had taken a beautiful photo of her baby girl's eyes & was asking for thoughts on what exact colour they were. And it just hit me all over again: I'll never know the colour of my little boy's eyes, I'll never get to gaze into them lovingly & I'll never get to see them shining back at me with love & recognition. I know I can opt to see fewer posts like this, but it just feels like such a lot of emotional effort to click on each one & say 'no thanks'. And it's not as though I'm not interested in babies - I am. I so wanted to bring my little boy home & was so looking forward to being his mum. I'd love to know how you've all dealt with this - is there a way to keep engaging with the content you find useful (like this sub) & not be confronted with things you find too hard to process? How have you dealt with the cruelty of algorithms following your heartbreaking loss?

Not sure it's the healthiest idea... but been working on making rainbow granny squares for crochet blanket for a hopefully future rainbow baby. 🌈

Anyone else have any crafting outlets?

I terminated in 2022 due to extremely severe HG.
Nobody in my life really knows I was ever pregnant, so I don't talk about it.

But October 15 would have been my due date, so today my baby would have been turning four.
I just wanted to say it somewhere.

Sending a big hug to everyone on this subreddit, thanks for reading 💜

I posted a photo on Instagram stories of a candle lit in honor of our baby girl, with her hand prints visible in the background. I wrote "wave of light" in the centre of the photo, and a comment with her name. Prior to this, I shared a few reels of what 15th October was and what wave of light meant.

My Instagram stories are only visible to a few "close" people. I rarely post - perhaps one or two stories every month or two. But whenever I do, most people always like them or comment on them.

I always felt like many people didn't support my loss and don't acknowledge it, but I wasn't sure if I was just overthinking it or not.

There were quite a few people who didn't react to my story yesterday and that just proved to me that I'm not overthinking it at all.

They'll happily like photos which include my living babies, but will ignore and forget about my dead one who I think about every single day.

I know it's just a post and it doesn't necessarily mean anything. I'm not a social media person, so I don't usually take these things personally. But to not heart-react to someone posting in memory of their dead baby is quite heartless.

It’s been a little over a month since our TFMR, and in many ways, I can genuinely say that I’m coping and healing. When I look back at how I was feeling a month ago, I can see a massive improvement in myself. The grief is still there, of course, but I’m slowly learning how to live with it, and I have days where things feel a little lighter again.

But there is one thing that I’m really struggling with at the moment, and it’s the uncertainty of not having answers.

We TFMR’d at 26 weeks after discovering that our little boy had suffered a stroke and had severe bleeding in his brain, which resulted in significant fluid build-up. What makes everything even harder to process is how normal everything seemed before that.

Our genetic screening came back low risk, and our 20-week anatomy scan was completely normal. There were no indications that anything was wrong with our little boy. We went into the second half of our pregnancy believing that everything was okay, only to have our world turned upside down just a few weeks later.

Since our TFMR, we’ve undergone various tests, but so far, nothing has given us an explanation for what happened.

I keep hearing how rare our situation is, how uncommon it is for something like this to happen, and how difficult it can be to find answers. Somehow, the more I hear that, the more isolated I feel.
I know that no two TFMR experiences are the same, but there is something incredibly difficult about trying to process such a devastating loss when you don’t even know why it happened. It’s one thing to grieve your baby, but it’s another to be left with so much uncertainty about something that has changed your life forever.

My husband and I have now decided to pursue whole exome sequencing before trying to conceive again. We want to explore every avenue available to us in the hope of understanding what happened and what it might mean for a future pregnancy.

I’m proud of how far I’ve come emotionally over the past month, and I genuinely feel that I’m in a much better place than I was immediately after our loss. But the uncertainty of not knowing why this happened is becoming the part I’m struggling with the most.

Has anyone else experienced something similar, where the 20-week scan was normal but something devastating happened later, and all the testing came back inconclusive? Did you eventually find answers, or have you had to learn to live with the uncertainty?
I think I’m just looking for some reassurance that we aren’t alone in this. ❤️

I’m 5 weeks post TFMR and I was surprised to wake up to my period this morning.

I have been crying on and off all day.

I logically know grief doesn’t work in a straight line. It’s so up and down. Some days I feel okay, then this week I have really struggled with time moving on.

The closer we’re getting to the holidays and then my due date in February I am really dreading.

Just looking for support on this awful journey.

I'm 22+4 and following the results of our morphology scan my husband abd U have made the very difficult decision to TFMR. This hasn't been an easy decision and now we are just in a bit of limbo. We are due to see our OB on Monday for next steps but can anyone shed light on this from Aus?

We are based in NSW if any one can provide state specific experience.

What is involved in the process? We had planned to find out the gender on birth (originally), but is it something we should consider finding out now if we have to register this birth and then death? Im guessing this means we need to pick a name to?

For anyone that doesn’t know, tonight is the “wave of light,” on 10/15, people light a candle from at least 7-8pm in their time zone in remembrance of the babies gone too soon.
This will result in 24hr candle burn for our babies.

Partake if it will bring your heart some comfort. 🕯️❤️‍🩹

Posting here because I do not have anyone else I can say this to except my therapist.

I feel so isolated. I feel so angry. It hasn’t even been 2 months since I lost my daughter and my close support system is expecting me to be okay. They’re surprised when I fall apart.

In the last week, my best friend and today my SIL told me they are pregnant. They called me to tell me. I wish people would stop for a second and think before doing that. I wish they’d ask “will this hurt her? What may be the best way to talk to her about this? Should I give her a text heads up?” These are questions I’d ask myself and it didn’t take me losing my own baby to think this way. I have always operated that way, always putting other people and their feelings and expectations before my own. That’s why this hurts so much because these people should know me better than this.

Instead I sit on the phone, trying my hardest to feign excitement while instead I am digging my nails into my palms to keep myself from sobbing.

I wish people asked me what would help me as they share this news. I am not expecting, nor do I want to be, in a bubble forever. But I need some fucking grace because every day I am literally doing my best to feel okay being alive.

Has anyone else felt this? How did you deal? I am really, really struggling.

When I came out I couldn’t stop crying, feeling guilt and wondering if I made the right decision.

I tried to stay strong in my decision up until the surgery, but it’s all hitting me after. I’d be waking up in the night not able to stop thinking about it the days prior, and I’m worried of how I’m going to feel now.

Part of me feels like this was right for my family, I have another healthy 18 month old son, and I’m so grateful for that but I worried so much what the future would hold if I had this baby, I guess it’s hard because you never know what they would be like.

I hope I can move past these guilty thoughts and feelings 😣

I guess this is really fresh and I just came across this group, so if anyone else is going through this right now and wants to chat, or has been through this before what helped you mentally?

I’m a 28 (f) that just found out devastating news that my baby tested positive for Down syndrome. Me and my husband discussed getting an abortion and I know with the way our life at the moment it’s the right decision for us. We’re both not in a financial position to be able to care for baby with special needs and I just feel it’s extremely selfish to bring a child into this world you’re not 100% sure you’ll be best parent you can be for that child. Even though my mind is made up i can’t help but feel a tremendous amount of grief and sorrow.

This is my first pregnancy and from the moment I found out I was going to be mom it was honestly the happiest day of my entire life. It has always been my dream to be a mother. And to add to that I always dreamed of being a mom to a girl and through this test I found out I was going to have a girl. Which just feels even more cruel. Everything I dreamed for and hoped for now all feels like a distant dream that feels unattainable. I’m trying really hard not be so negative but I can’t help but go to all the worst case scenarios. What if I’m never able to conceive again? What if this happens again? I’m so petrified of the abortion.

If anyone has gone through something similar, please share how you were able to get past it. I feel so alone and I feel like I have no one to turn to.

****EDIT: I just wanted to come on here and thank everyone for all the love, support, and kindness you’ve shown me. I’ve read through every single comment, even though I haven’t been able to respond to a lot of them. Please know that I’ve read them all, and every single message has meant more to me than you can imagine.

A little update: I’m booked in for my abortion tomorrow. I’m still incredibly scared, and I know tomorrow is going to be an emotional and difficult day for me. This is not how I ever imagined my first pregnancy would go, and I’m still trying to process everything.

But reading your stories and hearing from so many people who have gone through something similar has brought me so much comfort.

I’m trying to remind myself that this is not the end of my dream of becoming a mother, even though it feels that way right now. I’m taking things one day at a time and trying to trust that, eventually, I’m going to be okay.

Thank you for making me feel a little less alone during one of the hardest experiences of my life. I wish I could give every single one of you a hug. ❤️

Feeling shocked and heartbroken. We will always love our baby boy. Nervous about trying again and future risk. Announced our pregnancy to all of our friends and family LAST weekend and now have to deliver the news. This was our first pregnancy.

This is my first time posting but I have been following since I got my NIPT back in April. I just know this is the only place I can go to and people truly understand my feelings and pain. We lost our son in May at 19 weeks due to Trisomy 13 and life has just been extremely difficult since. We had a D&E and that process went smoothly. Since, we have had 2 chemical pregnancies and I now have to get a hysteroscopy and D&C done at the end of November due to SIS showing possible scar tissue or RPOC. It just feels like I can’t catch a break or get one foot in front of the other without being knocked down again. In addition to all of this I have been fighting with insurance for the last 2 months because they are refusing to cover the procedure and saying it was elective. The pain and agony I have already been experiencing then for the insurance company to make me feel like a villain when we all know the heartache and what it takes to come to this decision. It’s also my due month and both of my sisters and best friend are all expecting in the upcoming months. Life is really unfair and I’m exhausted/defeated. Obviously, with everything TTC has to be put on hold which is also really bothering me but maybe it will allow me to truly grieve. I’m tired of being in pain and having this physical ache in my chest that people don’t understand unless they have lived this life. Tired of acting like I’m okay when I’m crumbling inside. I am in therapy which helps a lot. I am looking to find more ways to help with grief and expressing feelings. I am able to do daily activities and function. I work and take care of our daughter. Most of my sadness comes around my period when hormones are fluctuating so maybe things that helped others around that time.

Thank you everyone for allowing me to vent and listening to me. This group has helped me in so many ways just by reading others post and knowing I’m not alone and my feelings are valid.

This group has been my support system for last 2 month. We had what you would call a rainbow baby, after trying for so hard for such a long time we had to go for TFMR and it broke us completely.
I know life can be difficult but I don’t know why it keeps throwing hardest things at us. I am far away from home, my only support is my loving and caring husband who has been heartbroken and scared for life after this experience.
I don’t know how you come back from this, i have read so many experience but still it is unimaginable for me at this moment.
I was 18 weeks when we send goodbye to our baby and it was a done through medical procedure which was tortures for me. Little did I know that I have to go back again to the hospital for MVA as there was RPOC. I was given antibiotics for any infection and inflammation. I just want this to end, the amount of time I have been to hospital is unimaginable. After 2 weeks, I feel so drained and exhausted all the time. My body is aching and i feel like sleeping all the time. Is it normal? I am bleeding on and off and not too much but How would you know that everything is cleared out and my body is back to being normal before preganacy?
I have read that some of you have felt physically fine after the procedure so just wanted to clarify if there is still something left after MVA? Emotionally I don’t how to come out of it.

It’s been one month since I last held her 🥹😭 I got my tattoo for her today and the whole thing is beautiful but I can’t stop staring at her tiny feet.

I miss her so much I wish I could post a picture of my tattoo

I don’t really know what I’m hoping to achieve with this post. Maybe I just need to get it out there and share it with people who might understand.
In May I TFMR’d my baby girl due to a severe heart defect. Post-mortem genetic testing confirmed DiGeorge syndrome.
Today, I had my NT scan in my current pregnancy, and once again, things don’t look good. The baby is measuring behind — 10+4 instead of 12+0. Three weeks ago, the baby measured 8+4, so there has been growth, but not enough. They also found visible subcutaneous hydrops.
The doctors don’t want to jump to conclusions just yet. The baby was curled up in a very hunched position, which made it difficult to get accurate measurements, so they want to give it another week and repeat the ultrasound.
I understand that we need to wait and see, and I know it’s too early to know for sure. But deep down, I know that something is terribly wrong.
After everything that happened in May, I feel like I’m right back in that same nightmare. I’m trying not to lose hope, but I’m also terrified of what next week might bring.
I have another ultrasound in a week, and until then, I’m stuck in this horrible limbo of not knowing.
I don’t even know why I’m posting this. Maybe I just need to let it out somewhere, because carrying all this fear and uncertainty is exhausting. 💔

What are your least favourite things well-meaning people have said to you to "comfort" you in the aftermath of tfmr or loss? I'm not talking about the anti-choice folks here, I'm talking about people who support your decision but are still boneheaded in the ways that they choose to comfort you. Here are some of mine:

- You just need to forget it and move on

- Maybe the baby just wasn't meant to be

- You just need to think positively next time so your baby gets positive hormones

- Just think about how much the baby would have suffered and then be happy that they don't have to

- Be grateful you found out now instead of later

Hearing all this makes me realize why there is such a stigma around talking about miscarriage and loss. I fucking hate that grieving and remembering my baby implies that I'm not strong. Guess what -- I actually AM strong. I am stronger than any of them because I can actually withstand this avalanche of grief and pain every day without wanting to run away from it. My grief is proof of my humanity, of my love.

It's pregnancy and baby loss awareness month. Until this happened to me, I didn't even know how many women around me in my life have experienced pregnancy loss. I will be *damned* if it don't talk about this experience, if I don't remember it loudly, for the rest of my life so no other woman who goes through this has to feel as alone as I felt going through it. I hope no one else I know ever has to experience pregnancy loss but statistically I know they will and I hope that they know they can come and talk to me.

I don't exactly know the point of this post... I guess I just wanted to vent to people that might understand.

Share your ink with me!

Did you get a memorial tattoo to honor your lost baby? If so what did you get, where and why?

I lost my twins due to a genetic condition almost 3 months ago and I've been planning one since. I'm going to be getting a pair of white pumpkins with their footprints on them like jack-o'-lanterns. I'm so excited to see how it comes out!

So I am currently 18 weeks with my IVF baby and my baby has a 10.5mm Cystic Hygroma. Last night, I was browsing the Reddit threads on what a D&E looks like in the second trimester. I’ve had 3 miscarriages before, but they were all pretty easy first trimester D&C’s. So after browsing, I see it’s a 2 day sort of procedure and it involves these horrendous things called Laminaria sticks. Cue panic attack over laminaria sticks and the pain associated with them.

We’re currently waiting for amniocentesis results to see if there are genetic/chromosomal reasons for the large cystic hygroma. The results are taking FOREVER. We thought they’d be back by now, but the cell culture still needs to grow in order to have enough to test. I was holding out on scheduling the fetal echo until after we had gotten the results, but since it’s taking so long I went ahead and called to book. Turns out, I should have called way before because they’re booked out until December 9th. I secured the December 9th appointment, but I’ll be 26 weeks at that point.

If the amnio results come back bad, we will TFMR. But if they’re actually good? It would depend on the fetal echo & now I feel like such an idiot for waiting to schedule it. Cue looking up what TFMR looks like when you’re that far along & now the scary laminaria sticks might not even be an option?!?!? If I do TFMR at that point, I may have to FULL ON DELIVER A STILLBORN BABY?!? Cue hyperventilating and sobbing in a parked car, because WHAT THE FUCK?!? I’m so scared & I don’t know what to do. I mean I can’t do anything, but omg I sobbed after the amniocentesis because it hurt so bad. A FULL ON DELIVERY?!? For not a live baby?!? But actually delivering a whole ass baby?!? I’m so scared & FUCK women’s healthcare because everything hurts so badly and it just feels like I’m going to have to endure so much pain both emotionally and physically and omg I’m so scared. Idk why I’m posting this, I just… am paralyzed and crying in a parked car &… I think the gravity of the situation just hit me.