I’m two weeks post tfmr/d&e. I was 19 weeks so I obviously look pregnant still and it is a painful reminder. Someone asked me if I was pregnant and it’s stung so bad. I didn’t know how to
Respond. I froze and just sort of stared at them. I am so self conscious of my body right now and this just made it 100x worse.
Hello everyone,
My world has been a nightmare for the last five years just one thing after another.
However I got pregnant 5 months ago and suddenly everything seemed full of light.
So After I made it past 12 weeks, I finally started feeling like myself again. I began smiling, making plans, and dreaming about the future. Even though I was dealing with issues with my house and everything else going on in life, I finally felt like there was light again….until news I got on June 30th.
Here is the background:
My husband and I have been married for 5.5 years. We started IVF because he had a vasectomy, and I was 35 when we began. I actually thought IVF might be a blessing because we wanted twins, so I thought, “We’ll transfer two embryos, have our family, and be done.”
Instead, it became the hardest five years of our lives.
The first six IVF cycles failed, and that’s when I started to panic. I used to be such an optimistic person. But then we went through five more IVF cycles, and each one brought more and more heavy heartbreak. During that time, my husband had three sperm extraction surgeries because that’s what our doctors recommended instead of a reversal. Near the end, we finally saw a male fertility surgeon who told us that doing a reversal at that point would be much more complicated because of all the scar tissue from the extractions. But my husband knew he only had one more surgery left in him, so we decided to do the reversal anyway.
By the grace of God, it worked.
Over five years, we went through roughly 16–18 surgeries and procedures throughout the 11 IVF cycles. We spent around $300,000, sold our house because we didn’t have insurance coverage, and lost a huge amount of money in investments that turned out to be devastating.
Then, five months ago, we finally became pregnant. Naturally a few months after we decided to wnd our ivf journey.
For the first time in years, I smiled again. me i did that my body is capable…..I started believing in the future. I started living again.
Here it comes…..
A few days ago, we found out our baby has a random condition caused by a random genetic mutation. It just happens to like 1 in 1,500 chance. Our baby was the 1 in 1,500. Oh my god crying so bad. Its NOT FAIRRRR. We’ve been told the baby has about a 50% chance of surviving the pregnancy, and if he does survive, his quality of life would likely be very poor.
After countless conversations, prayers, and meeting with specialists, we made the heartbreaking decision to end the pregnancy. The procedure is scheduled for Thursday.
To say that I’m shattered is an understatement.I have to plan travel and abortion and a funeral all next week :( a funeral for my unborn child oh my god. please help.
I honestly don’t know how to keep going. The last five years have been one traumatic event after another. IVF alone broke me, but we’ve also lived through several other devastating losses, including losing more than half of our hard earned wealth, and some other disappointing things. No breaks in between the sad times.
I feel like I’ve lost everything.
I don’t recognize myself anymore. I miss the person I used to be. She feels so far away now. she is dead.
If you’ve been through something like this, or if you’ve experienced unimaginable losses, how did you survive it? What helped you take the next step when life felt impossible?
All I want to do is die to be honest. I want to swim until I cannot swim anymore in the ocean in a far away country. I am so broken and can barely get out of bed. Its been loke this for some time now (during the last 3 ivf cycles)
I just cant imagine getting back into life and dealing or having ambition to do anything even go out to eat or “enjoy” hanging out with family and friends. I am not capable of living. I am dead amongst the living.
Right now, I feel completely broken, and I would be so grateful to hear from anyone who has found a way through this kind of grief.
We had a normal pregnancy that was classed as higher risk initially due to a combination of existing health issues on my end, but ultimately none which caused any issues at all throughout the 8 months that I got to carry our baby.
I'd started to relax after all of the scans and feel I let my guard down at our 32 week scan on 15/06/26. I went in with no concerns and absolutely no doubt that it would all be fine. The sonographer identified ventriculomegaly of 13.3 mm on the right side of our baby's brain. We tried to reassure ourselves that it could be something, it could also be nothing.
We were referred to Fetal Medicine the next day and they were very honest about what the results could mean. It could mean a profoundly disabled child, it could mean a child with some learning needs and it could be a simple variation with no obvious effects on the baby or as he grew in life.
They also told us that with the worst outcome, some parents choose to terminate. It felt in that moment that our lives were put on pause. I went through an amniocentesis, blood tests for myself and my husband and I was also referred for a fetal MRI two days later. We were told that some results might give us a conclusive answer quite soon, but that it may also be a case of waiting for all of the results to come back together to provide a clear picture. We were told we could be waiting for several weeks and I cannot describe the pain of not knowing, of waiting, of hoping and praying that everything would be okay.
On 22/06/26 we received the devastating news that the MRI had identified lissencephaly. Our baby had been diagnosed with a 1 in 200,000 condition. Lissencephaly is a rare genetic brain malformation where the developing brain lacks its normal folds and grooves. At best our baby may be able to express basic wants and needs and at worst may need support to breathe. The average life span is 10 years old and children often live with a life time of seizures, causing pain, upset and confusion.
We knew then and there, as we'd spent the week before discussing, that this is not something we would put our baby or child through. Children do not deserve a life time of pain and struggle, and we have chosen to take that away from our boy.
2 days later on 24/06/26, I returned to Fetal Medicine where our much wished for and loved baby boy was put to sleep. They booked me in at our local hospital on 26/06/26 to induce my labour. I was lucky enough to go into a specialised bereavement ward at my local hospital, supported by incredible midwives. My husband was able to be with me for the whole time I was there, alongside me for every step of the journey.
Most women are given 1-3 Misoprostol tablets before going into labour. It took 10 doses over 5 days before my labour started. 5 days of pain and discomfort that I am traumatised by.
I gave birth to my perfect boy on 30/06/26 at 07:09 am and I have never felt so much love. The trauma of the invasive testing, waiting for results, the sadness at saying goodbye and the pain of labour...all vanished when I saw his tiny little hands and feet. His beautiful face.
We got to spend a day and a half with our boy in the hospital. We were given a cold cot and the bereavement suite was private, so we spent those precious hours as a family of 3. We sang to our baby, read to him, held him and kissed him. We knew it would never be the same but we wanted to squeeze as much love in to those short few days as we could.
And yesterday, 02/06/26, we said goodbye for now. We took our boy to the mortuary to get ready for the next step. We will have him returned to us soon and we hope that we can find peace as a family.
I don't know why I am sharing this, what I hope to get out of it or whether it even means anything to anyone. But I lost my baby at 34 weeks and I want to scream it to the world.
Sending love to all those who sadly feel my pain. I see you and I hear you.
Recently received a diagnosis of very high risk T21 (currently 14w) the decision to tfmr is obviously emotional, however, I am very sure that going through the other testing is not in the cards for me and would rather just go through with the d&e while I’m still only 14/15w. We live in a state where that’s not possible so having to go out of state (fortunately we live near the border with Washington.) We have our appointment with our regular OB on Monday who is then going to refer us to a MFM, however, I have made an appointment for next Thursday at planned parenthood.
I’m looking for just any words to help, how to prepare, other people who have had to go to an in clinic, etc.
They told me the whole procedure would be a 4-6hr process. Not a multi-day process.
This is my second pregnancy after having a healthy and beautiful baby girl almost two years ago. So having experienced labor and delivery how does the d&e compare?? What should I be prepared for before and after??
I was recently in another group on the app “what to expect” that was for TFMR and was recently commented on by a person (I have hence reported the comment) that my decision to TFMR was morally wrong and I should leave it all to God. I personally come from a family that had a sibling with SEVERE disabilities whose quality of life is not something I would wish on anyone and the quality of life of those around her has been forever affected. I grew up as not a priority in my own home.
I’m having a TFMR at 13 weeks. A baby girl. 💔💔💔 please send love this way. I feel so numb. Maybe it will hit me later?
I just terminated at 17 weeks yesterday at a large hospital out of state. When I woke up from anesthesia, I immediately started crying because I realized my baby was gone and with my eyes still closed I asked, “where is the baby?” The nurse who had woken me up just said bluntly, “they’ll dispose of the remains.” It felt like such a harsh statement during a really vulnerable moment. I just continued crying and she called my husband to pick me up saying, “she’s very emotional.” I feel like it would have helped if she had simply said, “they’ll take care of the baby.” Or something. I keep replaying that moment in my head and it’s triggering all of these horrible thoughts. I already opted to have my baby cremated at an outside facility and I understand a random nurse at a large hospital taking care of a caseload of people recovering from different surgeries isn’t going to know that. Anyway, I don’t know why I’m posting this. I’ve got no one to talk to about this. Am I being too sensitive? Don’t say so if you think that. I will cut you. Just looking for comfort and understanding. I never read about the procedure and aftermath in depth because it was too overwhelming. Do they really just throw your baby away like garbage.
Life has been really busy since my world completely crumbled. I feel like the moment I got my diagnosis it shifted my mindset and knocked me off my entitled high horse where I believed these were stories that happened to other people and would never happen to me. I'm still one of the lucky ones as I have 3 earth side babies. 2 older siblings that loved through the heartache with me and my rainbow baby that reminded me that there can still be joy after life altering heart ache. My angel is always in my heart and on my mind but I feel recently he is very much at the forefront and the grief is heavily weighing on me the majority of the time. I'm getting married in September and it has always been the plan to use his ashes in our wedding rings to bring his presence to our special day and carry him with us going forward. I know in my heart that this is a beautiful way to honor his importance to us but actually bringing him to his final resting place just seems so final and it's eating me up inside. I used this group a lot in the early days and putting my feelings down for people who truly understood my pain gave me a release that I didn't have anywhere else. I haven't visited for a while but am scared to open up anywhere else as I feel.like people who don't understand will think that I should be over it and have moved on by now. Thank you for being my emotional dumping ground xx
I am 3 weeks out today from a very sudden and unexpected TFMR at 29 weeks.
I’m so so sad. I cry a lot every day. Some hours I’m alright and continue on with my responsibilities and taking care of my 2 other children. Other times I feel so full of sadness and despair.
In ways I feel like the grief and sadness is getting worse. It feels a lot different than those first 1-2 weeks of getting the shocking news that something went terribly wrong and having the delivery etc.
I do have a history of anxiety and OCD and I’m worried about falling into a deep dark hole and not being able to climb out. I don’t currently feel like that but I’m afraid I’m headed in that direction.
I’ve also had several people who are very close to me insinuate that it’s time to start picking up the pieces and moving on and “being grateful for everything that I do have” and I should return to work asap. I’m a labor and delivery nurse so I know work is going to be so triggering and I’m not ready to go back. And I want to throat punch them because like…. I just lost a child 3 weeks ago??!!! Am I really supposed to be further along in my grief at this point?
Just looking for support and words of reassurance and anything else you have to offer.
Today I should have been welcoming my baby girl into the world and introducing her to her family. Just over 5 months ago she was born sleeping. I think about her and miss her every day and today has been such a sad day. No one apart from my partner has remembered today is her due date. I'm sitting here looking through our memory box - photos of her, her hand and foot prints, holding the blanket she was wrapped in when she was born. She was here, she was part of our family, and we love her so much.
Grateful for this community of parents who know this grief and support one another 🩷
I’m not sure where else to ask this so if it feels off topic or is too much for any of you to weigh in on, please don’t feel obligated.
A friend of mine is moving forward with TFMR at 20 weeks. I am pro-choice and whole heartedly support her. It has been devastating to learn of the conditions that brought her to this decision as baby was/is VERY much wanted by her and her partner. My question here is how to best support her as she plans her procedure, heals and processes her grief? I’m prepared to make myself available at any time but also would like to buy her something/treat her to something that really makes her feel loved and taken care of through all of this. Any suggestions?
Hello!
Currently 16w pregnant with Mo/Di twins. Found out last week that baby B has sFGR (measuring <1%, 37% discordance) with a velamentous cord insertion and AEDF, so things aren’t looking good.
We have been discussing options with MFM about next steps, which is essentially one of three options: 1) watch and wait (not likely due to 37% discordance), 2) laser procedure to separate placental flow, or 3) selective reduction. It seems like selective reduction gives baby A the best chance at survival but we are waiting to speak with the fetal specialists to make final decisions.
I am curious if anyone has been in this situation and, if so, how were your outcomes?
Hugs 🤍
I had a TFMR at 12w6d in December due to a large cystic hygroma that had caused leg abnormalities and a weak heart. Baby wasn’t going to survive much longer. We opted to have genetic testing done after delivery (my blood and the baby’s placenta).
I fell pregnant again in April and had a phone call with the doctor about the genetic results and she said that there were no genetic causes for it happening, it seemed like a random fluke, so we should be fine this time around and there is further testing but it doesn’t seem like we need to have it done given that nothing was found.
Fast forward to today. I’m now 14 weeks pregnant with our second and our midwife referred us to genomic testing after speaking to the previous doctor. I had a call today saying that they didn’t actually do the extensive full range of genetic testing and need my husband’s dna to do that.
I’m quite mad that they waited until this late to refer us and fully explain the further testing after making out that everything would be fine.
So I’m now concerned that something could be wrong with this baby and I really don’t want to go through a TFMR again. Our last scan was fine and the baby was super wriggly. Nothing was flagged but I can’t help but worry.
Has anyone experienced something like this or can shed light on the difference between the genetic and genomic testing? If nothing was found in the NIPT or genetic testing, will anything be found in the genomic that would be life threatening?
I’ve seen a couple people post that support groups helped post TFMR but I can’t seem to find one that is currently taking place. Can anyone recommend one?
I’m one week out from our D&E and the waves of emotions are unbearable. It’s very different from the panic that was screaming before, now it feels like a nuclear bomb went off and I’m surrounded by ash and silence (and grief and guilt and fear and regret.) The worst part is that I’m the one who made the nuclear bomb finally explode. I know that holds zero nuance and isn’t exactly true under the circumstance and what our baby was facing, but logic literally cannot penetrate the feelings and pain right now.
Would appreciate any recommendations. I feel like the rest of my life will be this heavy and I don’t know where to go from here.
TW: sub-pregnancy I read so many inspiring stories here on other posts of people having a perfect pregnancy and healthy baby right after TFMR. The day has finally come, and according to my last period, I am roughly 6 weeks pregnant, and also in full-blown panic mode. My partner is beyond ecstatic, but my very first worry is if I am having an ectopic pregnancy or not because the left side is experiencing random feelings of dull pain. This did not happen during my first pregnancy, and I know that every pregnancy is different, but I can never feel bliss about a pregnancy ever again. My OB is out of town and can’t see me until the 22nd, and because of the traumatic experience I had with my previous pregnancy, I have a hard time trusting seeing anyone else with my care. I know no one here can give any advice on if it is or isn’t ectopic pregnancy, but it would really help to hear peoples’ concerns that they had that ended up being nothing and just simply a pregnancy symptom of the uterus stretching or anything else. I’m at the point where I might just call P.P. and see if they can do an ultrasound just so I can have this assurance that the fetus is where it should be. Thank you for listening to me, as always. The pregnancy after TFMR group scared me with many peoples testing at home and other random things.
ETA: In my previous pregnancy that resulted in TFMR, my then OB didn’t put in the NIPT at the 11w appt like she was supposed to, did it at the 15w, and then scolded me that I was upset that the test wasn’t done at 11w, even though her receptionist assured me that the test was in. Her exact words “if you don’t like it here, you can just go somewhere else.” And every appt she tried to bully me into doing a Pap smear even though I kept telling her that I had a healthy result already for 2025 at a diff practice and she faulted me that her office hadn’t gotten those results. Lastly, when she called me to tell me the results (+ for T21), she was very cold and factual about it. I had already planned on switching because I managed to switch insurances and was with this one because of of my bad insurance at the time, but it was a rough go with her,
I’m due to go in to give birth to my triploidy baby this Tuesday at 21w exactly. For the last couple of days I have had this crippling fear that she has already died in my body. The last time i saw her was last Tuesday the 23rd of June and her heartbeat was still so strong and she was kicking about.
I’ve not had any bleeding or unusual cramping (I have endometriosis so pregnancy has kinda been a bit painful for me with all the growth). It’s just a total worry.
Part of my brain is telling me that this is just a stupid worry I’m having but the other part is telling that it’s my “intuition” and that I’m worried because deep down I know something.
Did anyone else that had to terminate due to serious genetic conditions have these fears or is it just my stupid brain?
I am complete broken right now... Please be kind in the comments!
I am currently 21 weeks pregnant, a very wanted pregnancy (via IVF). Even though I struggled during the pregnancy because of nauseau and tiredness and I am under supervision of a cardiologist because of a heart disease, there were no complications for the baby. However, during the anatomy scan at 20 weeks drs pointed out our little girl had multiple heart defects. After more research it turned out to be tetralogy of fallot. Tetralogy of Fallot. This is a different heart defect from the one I have.
Description of her heart defect:
Both her pulmonary artery and aorta arise from the right ventricle, she has a hole between the ventricles (a ventricular septal defect), her pulmonary artery is narrowed, while her aorta is enlarged. In addition, her aortic arch runs to the right side of her trachea instead of the left.
This is a serious heart defect that will require open-heart surgery. When she is born, she will likely have insufficient oxygen levels and may appear blue (cyanotic). The doctors therefore want to create a small connection (a shunt) between one of her body arteries and the pulmonary artery shortly after birth to ensure enough blood can reach her lungs. They hope this will allow her to grow for a few months before undergoing open-heart surgery, but they cannot predict how she will do after birth. If her condition deteriorates during the home-stay, the surgery may have to be performed much earlier.
She will also need a donor pulmonary valve, which will have to be replaced multiple times throughout her life. This type of heart defect can sometimes be associated with genetic disorders, so I am currently waiting for the results of an amniocentesis. The doctors find it difficult to give us a clear prognosis because every case is different, and it is impossible to predict exactly how she will do once she is outside the womb.
Prognosis:
On academic websites, I read that the prognosis is described as "reasonably good." The conversations with the doctors have also been very focused on, "These are the surgeries and treatments we can do." They did mention that we could consider terminating the pregnancy, but they did not steer us in either direction.
However, the more research I do (I've read as many scientific articles with outcome data as I can find, along with countless personal stories on Reddit, blogs, and other forums), the more overwhelming the future seems. So many surgeries, potential complications, and an intensely medical infancy and childhood.
I've also read accounts from people living with this heart condition who describe the psychological burden of constantly moving from one surgery to the next and always having to monitor their symptoms. Of course, there are also children and adults who die from complications related to the condition or experience severe complications during surgery, such as strokes, brain injury, organ failure, and more.
How I feel:
Everywhere online I see incredibly strong parents who throw themselves into their baby's life with love, strength, and positivity, willing to do absolutely anything to keep their child alive. I always thought I would be that kind of mother. But right now, I don't feel that way.
Since the diagnosis, my world has completely fallen apart, and I honestly don't know if I can do this.
I have always been open to having a child with a disability or medical condition, but this all sounds so incredibly severe that I find myself dreading what's ahead. I also have a 2½-year-old son who deserves my time and attention.
I spend every waking moment gathering information about every possible complication and associated condition she might have. I realize that I'm almost searching for someone to tell me that terminating the pregnancy would be the right decision, but I can't find that validation anywhere.
Instead, I keep feeling that this heart defect isn't "severe enough" to justify ending the life of my precious little girl. At the same time, I am terrified of bringing her into the world knowing what may lie ahead.
I also lost my sister after she spent 17 years seriously ill before she eventually passed away. I know firsthand how much chronic illness affected her quality of life, but also how incredibly difficult it was for my family and me as her caregivers. I wouldn't wish that on anyone.
Sometimes I even wish the diagnosis were clearer—that the doctors tell us these abnormalities are completely incompatible with life—because then the decision would be easier. Instead, the decision is ours to make, and I simply cannot make it.
Time is running out because where I live we have to decide before 24 weeks. I know that my partner and I are the only people who can make this decision, but I feel so incredibly alone in it that I just wanted to share my story somewhere.
Has anyone here had to make a similar decision about whether or not to terminate a pregnancy where the outcome wasn't completely clear-cut? I don't mean situations where it was obvious that the baby would not survive, but cases where the prognosis was uncertain and you truly had to make the choice yourselves.
I’m hoping to hear from others for guidance and perspective.
I am 37 my wife is 39. My wife is 13 weeks and our baby was diagnosed with Trisomy 21. We are devastated. I told her we should TFMR but she does not know if she could go through with it. I also told her I will absolutely love the baby with all my heart and told her that I would never have any resentment towards her if we have the baby. I’m not scared of raising a child with a disability, I’m scared of caring for an adult with a disability. We have a healthy 3 year old, and I also do not want to put the burden on him of caring for a disabled sibling when we are gone.
As the father, I feel like I’m looking at the situation in a cold and calculated way. In my head, I want her to move on from this pregnancy so we can start planning for the next one. We have a healthy embryo we could transfer from a round of IVF (this baby with
Trisomy 21 was conceived naturally).
However, I realize how selfish that is on my end. She will have to deal with the procedure and the physical and emotional toll to a much greater extent than me.
Regardless what we do, I will support her decision. Im just hoping to hear from both people who decided to TFMR and also people who have children with
Trisomy 21.
Thanks
This is just to vent. I don’t know if I’m angry or just sad I don’t get to have the naivety of pregnancy ever again.
My angel baby was born on Feb 25 at 21 weeks. We TFMR due to q22 with severe heart defects that were incompatible with life. Her due date is July 5th so it is all weighing heavily on me this week. We have been TTC since but haven’t been successful yet.
A month ago my brother in law and his wife told us they are pregnant. Of course I am happy for them but it’s a hard reminder of the daughter we lost. Their baby will be due in mid January so she is around 12 weeks right now. Last night they sent us an invitation to their baby shower in mid August- she will only be 18 weeks. I am shocked they are having the shower so early- before their anatomy scan.
Do they not understand what happened to us at the anatomy scan? Feels a little insensitive? I don’t know. Just needing to process and writing it down helps.
hi all. I just Tfmr yesterday. I do have 2 young kids I am totally grateful for but I’m grieving this baby and the fact I was going to have another baby run around with my others. I know I can have kids into my 40s but I’m already 39 and this was such a traumatic pregnancy and I’m scared to even try to get pregnant again in the future. plus I don’t think my husband wants to go Through this again. i am sad ill most likely never get a newborn stage again and I miss this baby so much as it is. I’m just venting.
Someone asked me that question for the first time today since my TFMR back in February. It was at work and I didn’t want to make it a thing so I just said “no, not yet” but I feel so so guilty now. I don’t want to disrespect my daughter but in that moment I was just trying to survive and so I said no.
I feel bad, like I don’t get to mourn her because we decided to terminate, and because I had a D&E so I never got to meet her. But she was my wonderful baby and I miss her so so much. Her due date would have been last weekend. She should be here with me now.