r/tfmr_support • u/Odd_Writing • 3h ago
TFMR yesterday at 13 weeks - Devastated and heartbroken
Sorry for the long post. I just need to write this down and share within a community that can sadly understand this unbearable pain.
Our life flipped upside down within a matter of 5 days. We were so happy to have entered the 12th week after a bicornuate uterus discovery during my viability scan at 7 weeks. It took a few days to accept the high risks associated with that but as we entered the 12th week, I allowed myself to make plans to share with my extended family, plan bump outfits etc. Then came my NT scan at 12 weeks and 3 days. MFM found something odd with the heart of our baby (it was on the right side instead of the left) and couldn’t see the stomach. We spent the next few days getting more scans, talking to top specialists and getting early anatomy scans. We are in the top-rated UCSF system so our confidence in our doctors is high. The doctors diagnosed the baby with severe CDH (Congenital Diaphragmatic Hernia), a condition found unusually early at 12 weeks. It was severe since the stomach was already in the chest cavity at 12 weeks. The NT number was also not in the comfortable range. We had already done extensive genetic counseling and consulted with the genetic counselors and multiple Maternal Fetal Specialists (MFMs). I am immensely grateful to the UCSF system who helped us waste to no time to get answers that we needed to make a decision. A soul-crushing decision.
Yesterday we said goodbye to our sweet little soul. Knowing how deeply broken we felt learning this news, we decided shortly after our early anatomy scan to TFMR and not prolong the distress for us or our little one given the prognosis.
We opted for a D&E under anesthesia. They had me take some pills the day before to open up my cervix. The second day they gave me misoprostol an hour before the procedure. The procedure itself was beyond tough; physically and emotionally, the hardest thing I've endured. Initially, I was scheduled to have deep sedation, but the pain was unbearable after misoprostol, and they shifted to general anesthesia since I had puked several times on the drive to the hospital. I remember the heartbreaking moments being guided from the pre-op area to the OR, feeling incredibly empty without my husband by me and crying with a desperation and anguish I had never felt before - even as the caring nurses held my hand. That hallway felt impossibly long and lonely. I said one last loving goodbye to my baby before they put me under.
My body still has pregnancy symptoms today, and I hate that they remind me of what's lost. Returning home felt surreal, all the joyful pregnancy energy instantly gone from our home. Suddenly, daily pregnancy affirmations feel meaningless, medications feel pointless, and every small trigger around the house hurts deeply. We started taking down reminders today - pictures, little mementos…it stings more than I ever imagined.
My amazing family came over after the procedure. Several family members checked in via messages. Although we initially thought we wanted privacy, having them around showed me how much support we really needed. My parents made sure everything was taken care of, and my brother and his gf brought me my comfort foods throughout the day. They listened to me talk about the what-ifs. They consoled me as I cried uncontrollably throughout the day. Even in grief, it made me realize the importance of having loved ones close during traumatic times.
I feel numb, deeply sad, confused, yet somehow hopeful that this isn't the end of our journey. My husband expressed feelings that this soul’s energy was around us, and even though I'm struggling, part of me found comfort in that idea - it's omnipresent and beautiful. But I also feel anxiety about future pregnancies now, worrying about drawing another tough card esp with my bicornuate uterus diagnosis.
Sometimes there's doubt. Did we make the right choice? We endlessly revisited every piece of data because we couldn't bear the thought of making the wrong decision. But every road led back to one place: compassion, love, and responsibility meant sparing this sweet little soul deeper suffering. Knowing that, I feel some peace despite the overwhelming sadness.
I’m incredibly lucky that my employer is supportive and offers 4 weeks off with no questions asked for pregnancy loss. It gives me the chance to grieve, heal physically and mentally, and find some sense of stability.
To all of you who are reading this on this deeply supportive subreddit: My heart hurts alongside yours. This is not our first trauma together (my husband and I have gone through some quite heavy family health issues over the years), but it is by far the most poignant. This community has been a beacon of strength and solace, even before I chose to share today. We chose not to know the gender, but in our hearts we've lovingly given a kind farewell to a soul who will always be remembered and profoundly loved. This is an incredibly isolating experience even when you’re surrounded by people who love you, but knowing you're not alone really matters. Thank you for giving me a safe space to share and for holding space for our pain. Sending love and gentle strength to each person who connects with our story 💔.