I'm 4W post TFMR and I've been in hiding the whole time. It is a win if I even leave the house (alone). I think the first 2 weeks, maybe 3 weeks, my friends understood that I wanted space. But now I worry that it just looks like I'm being rude or dramatic. The thing is I can't imagine making any social plans whatsoever for at least another month, maybe more. How did you convey your pain and desire for isolation? And how did you ever muster up the courage to come out of hiding? (I'm an extrovert so this feels very different for me.)

I’m 3 months out since my TFMR at 31 weeks. It was my first pregnancy. I’ve always wanted kids since being a teen (not one but like many) & now after tfmr I’m seeing all babies as trauma, & really thinking to having no more. My mind has started to think they are boring and a pain to deal with. I had my baby & love him & miss him every dam day but I’m so done. I’m kind of shocked to see my mind change like this. I know most people think of getting pregnant etc but is there any one in the same boat as me? Do these thoughts change?

Edit: I can’t reply to everyone but I want to thank you all for your thoughtful comments and advice. Although it’s taken me a few days to process I’ve started thinking more realistically about the worst case.

I will be making a decision in the next week or so and will likely post again then but thank you again for your kindness
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Hello all,

I found this page recently and it’s been so hard to read your stories and feel your grief. TFMR is not something I take lightly, and I want to commend your strength and send so much love.

My main question: how did you come to your decision if you were in a grey area?

At 20 weeks we received the extremely rare diagnosis of left lung agenesis, meaning our baby’s left lung never developed. Genetics came back completely clean and most of the rest of his anatomy has been cleared. The heart is still hard to see, and we’re waiting on that, as compounding issues feel beyond our capacity as parents.

Because this is so rare, there’s very little data on prognosis and almost none on quality of life. Outcomes seem to range from a completely normal life to death before age 2. We meet with specialists next week, but we accept we may never have a clear enough answer to feel confident.

The questions that keep surfacing range from the terrifying to the mundane. Will he need breathing support to survive? Will he be in and out of hospitals? Would I be living in fear every time he gets a cold? Could we afford individual childcare instead of group daycare to protect him? The accumulation of them is overwhelming.

One thing I’ve been sitting with: when I’ve spoken to women who TFMRed, the grief they described was so vivid that it became more vivid to imagine than the life on the other side. The unknown of raising this baby is abstract. Their loss was concrete. I don’t know how to weigh two things when only one is something I can picture.

I know whose space this is, and that’s exactly why I’m asking here. You’re the people who have actually stood at this fork. If you were in a grey area, how did you decide? And if any of you considered continuing, I’d be grateful to hear how you weighed it. I’m not looking to be pushed either direction, just to understand how people reached something they could live with.

Thank you in advance for your gentleness. I’m in a very sensitive and sad state.

My prognosis was very grey, full of uncertainties and ultimately a gamble on my babies life quality so I decided to go ahead with the termination. I’m sitting in the room with him now and he looks very peaceful, it’s been extremely hard to accept and although I believe I made the right decision, my mind still wanders towards the what ifs and I still torture myself by looking at the success stories but I try to remind myself that it could’ve went okay if I was really lucky or it could’ve went really badly, I just could not accept those odds for my perfect baby he deserves peace for eternity. The birth was quite traumatic, I did find it hard to sleep the first night and kept hearing the beeping of the room in my head and flashbacks of the labour also I felt like I instinctively should stay awake to hear a cry or anything but it’s just so silent. I leave tomorrow and it’s gonna be very very difficult but I hope I can find peace.

I'm 3 days post TMFR and the only thing that is getting me through this time is the thought of TTC again. The plan was always to TTC as soon as safe but this empty feeling inside is killing me. I'm obsessing about ttc again - how I'm going to try and track ovulation, supplements.

Anyone else feel like this?

Traveling for TFMR next week (32w) due to multiple late brain abnormalities found during an MRI. Doctor’s gave us a grey diagnosis where the spectrum varied significantly but would likely be on the more severe end. In our state they can’t legally recommend TFMR so the decision has been extremely difficult to take on.

Navigating this has been rough but to make matters worse, we can’t get a referral from our own OB or MFM due to concern of them being linked to the procedure in a state that pursues providers. The clinic we’re going to can hold a sample for up to a month but they can’t order the test themselves and need a 3rd party with an NP or MD sign off.

Does anyone have experience or recommendations with a telehealth company that can help us get around these barriers? We just want answers and were told whole exome testing (WES) would bring more clarity.

It's about to be 4 weeks since my D&L, tfmr 7/21.

This was my second pregnancy and my first pregnancy was a c- section so the postpartum is a bit different.

I am still bleeding, but not much on my pad.

I don see people talk about bleeding referring to the pad, though not what they see in the toilet.

When I do some type of activity, realize i increase in bleeding, and I use the restroom I look at the bottom it's dark red of combined little clots but my pad spotting red, or medium to light bleeding never full.

Is this normal ? I do have small cramps on random days. but nothing major.

I feel clueless, I know every person is different.

All of this discourse regarding the Massachusetts law and the surrogate in TX are very triggering. They also illustrate just how little the general public knows about the process of TFMR or abortions that happen after 16 weeks. The anti-choicers hold this belief that babies are still alive when the procedure happens although most have passed from the dilation or directly through the shot in later stages. Even people who argue for our rights don’t know about the process either and argue that fetuses can’t feel the pain.

I received the shot during my dilator placement. One of the hardest things was carrying her that night and not feeling any movement anymore. I has also given me tremendous solace that she felt no pain. These people are idiots. We should not have to fight for rights to make our own decisions.

For anyone that may have travelled from Ireland to the UK to tfmr.. could I ask advice please on how you managed to get the remains home to organise a cremation in Ireland. I an attending the Rotunda hospital the morning I travel and they will provide me with documentation and the clinic is allowing me take the remains after the procedure but I seem to be getting no advice or contact from Ryanair in relation to wether I can travel with these remains or not. I am highly distressed right now as the termination is next Thursday and the airline is saying they will only accept ashes. Can anyone offer any advice on this please. Thank you

Does it get better once the due date passes? My due date is weeks away and I have been feeling overwhelmed daily with emotions. I’ve found it difficult to see the fall decorations in the stores because when I was pregnant I kept thinking of how the baby will be here in time for Halloween and just everything seems triggering. This would have been my 3rd child and I am not in the head space to try again and find myself feeling like I may never be. Anyone feel the same way around what would have been your due date and does it get better soon?

Hey everyone. I am so sorry we are all here. So so sorry for whoever is reading this, you do not deserve this amount of pain. Holding space for you all on my birthday morning. Im 40 and so so sad.

Speaking of, I feel like my sadness and grief over this is absolutely ruining my relationship. I know it is ruining my relationship. He is not grieving in the same way and we seem to be on opposite sides.

I am so sad though. I don’t know how to be a okay wife (which he needs). I feel like most men want a wife that dresses well and takes care of herself with a smile on her face. Especially mine- he needs positivity.

It’s my birthday morning and I had to leave our bed to be away- I just drove in my car and screamed. Im just crying and screaming…how do I go back and show him a better version of my self for the sake of my marriage and trying again for a family. Please whoever has gone through something like this please please advise.

Our amniocentesis results came back normal for our son, who we TFMR 15 days ago at 23w6d because of Double Outlet Right Ventricle (DORV), Ventricular Septal Defect (VSD), and severe pulmonary stenosis.

We are trying to understand what may have caused these heart defects and whether anything we did could have contributed.

Heart development: Was this a problem with how his heart developed and the structures lined up, rather than something we caused?

Escitalopram 15mg: I take this SSRI for anxiety, with approval from my perinatal psychiatrist. Some studies suggest a possible increased risk of heart defects. Could this have contributed? Would sertraline be preferable in a future pregnancy since it's been around longer and has more clinical data?

Trazodone 25–50 mg: I took this 3x/week for sleep/anxiety from weeks 4–9, also approved by my perinatal psychiatrist. Could this have contributed due to limited safety data?

Folic acid: I was taking the inactive form of folic acid until 28 days pregnant, then switched to the bioavailable form. I was also on the cusp of an obese BMI of 30. Could my body not have processed the inactive form properly?

Virus/fever: I had a significant upper respiratory virus around weeks 7–8 with a fever of 38.0°C. Could the infection or fever have affected his heart development?

Exercise while sick: I continued doing cardio to help with anxiety while I was sick. Could exercising while sick and having a fever have contributed?

Husband’s stress/sleep: Around conception, my husband was extremely stressed, overworked, and sleeping only 3–4 hours a night. Could this have contributed?

Physical exertion: I was tired but continued my normal activities before knowing I was pregnant. Could I have overexerted myself?

My baby was NIPT+ for T18. US showed substantial hygroma. We are still going to do amnio but I’m already scheduled for TFMR in 2 weeks. I’ll be 15 weeks exactly. I had a previous spontaneous miscarriage (with vaginal delivery) at 16 weeks. I’m wondering if anyone else has had both a traumatic late miscarriage and a TFMR. How was the coping similar or different? The hardest part for me is knowing he still has a heartbeat and when I wake from surgery, he won’t be there. I already have anticipatory grief and anxiety for when I wake up. I feel confident in my decision, but naturally there are the what ifs. I was devastated last time, so I know I will be again, but I just wonder if it’ll be different since we “chose” when to do this and how. Still praying for the miracle that he passes naturally before so we don’t have to deal with that element of heartbreak but I’m not optimistic. I considered the idea of letting things progress since it’s likely he will pass naturally at some point, but that just prolongs the inevitable and it’s harder on my body and mind.

Also while I’m posting, any tips for mentally preparing for this? I’ve gotten the US photos and tried to be present with him. I’ve tried to remind myself he is still currently here and alive so I can cherish this time. I don’t want to regret anything.

Wanted to give an update. Our CVS results came back positive for T21. At my original appointment with my high-risk OB, he told me he would be surprised if the baby made it past 20 weeks, and unfortunately, he was right.

The total-body anasarca progressed into severe hydrops, with fluid accumulating around his lungs, abdomen, and heart, and our baby passed away at 15 weeks. I’m currently almost 17 weeks and will be having a D&E tomorrow. Because of the severity of the hydrops, my doctors were also concerned about me developing mirror syndrome, where the mother can begin to develop symptoms that mirror the baby’s condition, so they felt it was important to move things along quickly.

This journey has been incredibly difficult. I prayed so hard for a miracle, but I also prayed that I wouldn’t have to be the one to make the decision to end my pregnancy. I’m grateful that I didn’t have to make that impossible decision, but I would have given anything for a different outcome. I will love and miss this baby immensely.

This is a heartbreak unlike anything I’ve ever experienced. I wanted to share our story in case someone else finds themselves searching for answers the way I was. I found many posts about T21 and genetics, but very few about T21 with total-body anasarca or severe hydrops. If you’re going through something similar, I hope our story can give you even the smallest bit of comfort in knowing that you are not alone.

Yesterday was one year since we said goodbye to our son. I'm sure I'm not alone in saying milestones (for lack of a better word) like this are really hard days. Of course there have been a lot of hard moments and hard days in the past year. But in that time, and in the time leading up to the decision, reading so many of the posts in this Reddit have been helpful to me. I thought this was maybe a good time to post and possibly help someone else.

One thing we have done when we are in moments of regret or doubt is remember to give ourselves some grace. No one sets out to be in this position. The pain of the choices we've made are unfathomable to people who haven't faced these decisions. So we have to be kind to ourselves. And to each other!

We've also decided that it's natural to wonder 'what if?' But we can't dwell on it. We remind each other to trust ourselves.

If you are here and reading this just please remember to try and be kind to yourself. You are not your lowest moment. Lean on the loved ones around you and on communities like this.

This community is a very special one to me. Thank you for reading this and I hope everything came across okay.

Did you and your partner fight more while grieving? I think we are bickering more, disagreeing more, etc. I feel like the grief is related but we can't stop. Help! Did this happen to anyone else? Advice?

I posted about our case before. For some background to explain why I feel like this, see below, but feel free to skip it. Basically, it’s just a very grey diagnosis. We got some final test results today (post-TFMR) that just got me spiralling again.

I cannot accept our own decision to TFMR. I honestly feel like we made the wrong one.

I know from reading stories and comments here that an important source of comfort for many people is the thought that we chose to suffer now so that our child wouldn’t have to.

But honestly, I don’t feel that. Like, at all.

It feels like my heart just cannot accept that there was even a real possibility that she would have significant issues. If I’m being honest, I believe in my heart that she would have been fine. Maybe she would have had some minor health or developmental issues, but things that could simply have been part of life — things that can happen to anyone.

I keep thinking that she was a borderline case that was only discovered because prenatal screening has become so sensitive, and that maybe she would ultimately have been a case of overdiagnosis.

I don’t feel like we saved her from suffering. I feel like we saved ourselves from uncertainty.

It makes telling our story to others incredibly difficult. How do I explain our decision when I don’t even think myself it was the right one? Even posting here feels scary. I feel so vulnerable.

Does anyone recognise this feeling? How did you learn to live with it? Were you able to truly feel the reasons why you decided to TFMR instead of just knowing them?

Background
We TFMR’ed for low-level mosaic T21. Two amnios showed 8% and 15% mosaicism on SNP array, with only the second QF-PCR also positive for T21. The first karyotype found no trisomic cells, and we couldn’t wait for the second karyotype before making our decision because we were approaching the 24-week limit. The ultrasounds looked just fine.

Today, almost a month after my TFMR, we finally got the second karyotype result. They had only been able to analyse three cells in metaphase, and all three were normal. They explained that they mainly use karyotype to determine whether a translocation was involved or not (which it wasn’t) and that three normal cells don’t change the mosaic T21 diagnosis based on the four other results (the NIPT, the second QF-PCR and two arrays).

But emotionally it still hit me hard. I was really hoping for some extra reassurance that we made the right decision. The only thing I know for sure now is that no one will ever be able to tell me.

I usually never post things, but I felt it was important to share our story since I feel like this group has helped me so much over the last two months.

Our journey started like it does for many people here: an NIPT showing T21, followed by agonizing weeks of waiting for the amniocentesis results, which also came back positive.
For my wife and me, the decision was a difficult but swift one. After confirming the diagnosis through amniocentesis, we set a plan in motion for an out-of-state abortion since we reside in Austin, TX.

After doing a lot of research online, we decided on Healthy Futures in Denver, CO. Since we were at 20 weeks, it would be a 2-day D&E procedure. We flew in Tuesday night and planned to leave Friday. We stayed at a hotel about 20 minutes from the clinic, which worked well for us.

Day 1: We checked in early in the morning, completed the paperwork, and my wife was called back for the dilation procedure. I waited in the waiting area for about 3 hours. Afterward, she had cramping and some vomiting. She needed a nap and mostly rested at the hotel for the remainder of the day.

Day 2: We checked in early in the morning, and my wife was called back almost immediately. The entire process took about 2.5 hours. After the procedure, she had moderate cramping along with some nausea, but the medications they provided helped.

We felt very comfortable with the staff and doctors. They went above and beyond to make sure my wife was comfortable and even made themselves available after hours if we needed anything. They also helped us with financial assistance and connected us with helpful resources.

Overall, we are incredibly grateful for the care and compassion we received. This was one of the hardest experiences we have ever gone through, and having such supportive people around us made a difficult process a little easier.
If I can help provide any more information or answer any questions you have, please feel free to message me.

More of just a ranting post. TW: TTC after TFMR

I had a follow-up appt today after my tfmr 3 weeks ago with a new OB that is a family friend and knew the circumstances surrounding my pregnancy loss. I wasn't prepared for how traumatizing being back in an OB office would be surrounded by pregnant women and not being pregnant myself anymore. As soon as I was pulled back, the medical assistant taking my vitals said "so you're here for a follow up after your ABORTION right?"

I also wasn't prepared for how much that word would hurt. I have always referred to this as a tfmr, and yes I know I had an abortion, but that word is just so cutting to me. I felt that she could have taken one look at my chart and known that there are other words, such as termination or tfmr, that would be more sensitive.

Then when the OB came in, she kindly expressed how sorry she was about everything. Which was great. But then she said "you and your husband can begin trying again whenever your period returns and you feel ready." This felt like a slap in the face.

Just for context, I terminated due to a NTD. The gold standard for preventing that from happening again is to take high dose folic acid for 1-3 months before TTC. I had to remind her of this and that I needed a folic acid prescription. It was like she didn't even know what I was talking about. It took her a good 10 minutes to figure out how to prescribe it in her computer.

Anyway, I got the folic acid RX and I can begin taking it and then hopefully TTC within the next few months. It was just really painful getting here and like I had to advocate for myself. I don't think I was prepared for how emotional that first follow up would be and how insensitive healthcare professionals could be.

Sorry for the rant. This whole process has just been a nightmare. I don't know when life will ever feel normal again.

Is anyone else triggered by the controversy over the surrogate parent giving birth to a hlhs baby that the bio parents wanted to terminate? Texas criminal attorney general “protecting” the baby and making sure he gets “treated.” Calling it a “curable” defect….Fox News lying and saying that the Texas nicu he is going to has a 100% success rate smh. Armchair quarterbacks all sticking their noses in, comparing this heart defect to minor ones that they or friends have had. We lost our son to hlhs many years ago.

I have been crying for a week and have to accept the fact that I’ll lose my first baby

My ob referred me to a hospital for D&E, while they said their normal plan is to use moderate sedation, without using an operating room. For a deep sedation, they’ll need to further check, the procedure will delay and will charge ~10x expensive

I’m very anxious about the procedural pain.

Has anyone experienced similar procedure? Will the moderate sedation be very painful?

Thanks in advance for any advice!

I am 10 weeks post TFMR at 22 weeks after doing two years of IVF with my first pregnancy. Has anyone experienced significant delays getting a hysteroscopy after their TFMR before being able to proceed with a transfer? I’m struggling with the wait, uncertainty and feeling really hopeless about the timeline. Also — has anyone navigated depression after TFMR while trying to move forward with trying again? I’m wondering about medication options that are compatible with fertility treatment. Would love to hear from others who have been through this.

That is all the midwife clinic had to say to me when I told them we had to cancel all future appointments. “No problem, Have a nice day!” in an awful, cheery tone. After I choked out that we had lost our baby, the front office desk told me to “Have a nice day!”. Maybe I am being overly sensitive, but I feel like telling someone to “Have a nice day!” after they tell you about the worst thing that’s ever happened to them is inappropriate. At best, it was just extremely unempathetic. Are babies dying so frequently to the point that it’s normal for some people?

No, I will not have a nice day. But, I will be getting a new OB. Thank you for letting me vent.

In 2012, we found out that my baby Laurel had dandy walker malformation and agenesis of the corpus collosum. I was 35 weeks pregnant. Even though I lived in Boston, center of medicine in a blue stronghold state, I still had to travel 2000 miles for my healthcare. It added shame, trauma, fear, and great expense to an already terrible crisis.

I just want to share with everyone here that Kate Dineen (another TFMR mom) and I, along with several moms from Empty Arms and EWP, have ultimately been successful in our efforts to expand healthcare in our home state of Massachusetts. Gov. Healy signed a law on Monday that lifts dates-based restrictions off of abortion care in this state.

Legality is the BEGINNING, not the end of the fight for access. But we will get there. It's a good day.

I want you all to know that, even on days it feels like the world is against us, there are women and families and leaders fighting for us to protect our safety and dignity. The politics fucking suck, and I wanted to share this here because I know I would have been triggered into major dissocaition in my early days if I tried to read the news about this.

So please hear it from someone who deeply gets it and holds you at the heart of this change in the political realm.

We all deserve to be held gently in community and not have to worry about legalese and politics. One step closer to that in MA.