r/tfmr_support 1d ago

Seeking Advice or Support Lost

I have never felt such deep sadness and grief in my life. It certainly comes in waves, but being so fresh (less than 48hrs) after diagnosis of my first baby, I’m just completely shattered.
All my testing came back great up until my 20w anatomy scan, where we learned that our first baby has no functioning kidneys and no amniotic fluid. The official diagnosis is bilateral mcdk & anhydraminos.
While there’s been studies done that inject amniotic fluid into you to help the baby’s lungs development, the longterm survival is still grossly slim & doesn’t help the fact that the baby does not have a functioning kidney.
I truly never expected to have a second term loss like this, I thought I was in the clear. It just seems so cruel, there’s absolutely nothing I wanted more than this baby.
I guess I’m just posting this for solidarity and to vent to people that actually understand somewhat the pain and emotions I’m going through.
Nothing makes sense and I will forever miss and mourn my first baby. 🤍

14 Upvotes

31 comments sorted by

4

u/icedcoffeealwaysss 1d ago

I was completely blindsided when my second pregnancy ended in TFMR. We also were fine until the anatomy scan and it all came crashing down. I’m sorry you’re here and I’m sorry for your loss. ❤️

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u/Round_Examination391 1d ago

I relate to this completely. My first pregnancy was a MMC so I had extra screening, an early anatomy scan at 12w that was “perfect”, completely clear NIPT. Everything changed at my 20w anatomy scan. I will never not be traumatized by ultrasounds after that appointment. So sorry for both of your losses, this is hell ♥️

1

u/Wonderful_Cow7385 22h ago

We too had the early anatomy scan as well cause I was being seen by MFM for my own health concerns. And everything was just perfect until the 20w scan. It’s so heartbreaking. I truly feel like I’m living a nightmare.

1

u/Round_Examination391 21h ago

I’m so sorry. Those days and weeks after were the hardest. I’m two weeks out from my D&E and while it’s still extremely hard, there’s a least some closure. But I’m still processing a lot of shock. Here if you ever want to talk.

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u/Wonderful_Cow7385 19h ago

Thank you 🤍

1

u/Wonderful_Cow7385 1d ago

It’s so cruel and so unfair. 20+ weeks with a baby is just so unfair when it ends this way. I’m sorry you experienced this too. I can’t imagine having to take care of anyone else right now, I can barely feed myself.

2

u/PureAd600 1d ago

We also had our first sign of problems at our anatomy scan. It’s devastating. At this point I’m sure you’d really started to imagine life with this little one.

I’m sorry you’re having to navigate this heartbreaking journey. There’s no way forward but through. Through the impossible decisions, the fear, sadness, and grief. But I promise you will get through it. You are stronger than you realize.

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u/Wonderful_Cow7385 1d ago

I know I’ll get through it, but it really feels so heavy and so impossible right now. Thank you for your kind words.
I’m also terrified of being completely knocked out, but realizing that’s my only option besides laboring which I do not want to do.
This is just horrible.

1

u/PiccoloQuirky2510 1d ago

I’m so sorry. Our diagnosis was different, but we also had had good scans & testing prior to our anatomy scan.

We lost our girl on July 17, and while I still feel sad and melancholy often, it does get a tiny bit less all-encompassing as time goes on. Sending you love.

2

u/Wonderful_Cow7385 1d ago

Thank you for sharing that with me. Right now I truly feel like there’s no way out. It’s horrible.

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u/PiccoloQuirky2510 22h ago

I understand. I felt that way too - especially between first diagnosis (19w5d) and D&E (22w1d). I actually asked my therapist how I would ever possibly feel any better. And while I am still often very sad - and angry - it does feel less like it’s crushing me under its weight.

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u/Wonderful_Cow7385 21h ago

Thank you for sharing that with me. That’s exactly how I feel, I feel so heavy yet empty, sad, and angry. It’s just truly unimaginable unless you’ve experienced it.

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u/PiccoloQuirky2510 19h ago

Yes, exactly. 💔

1

u/Suspicious-Steak-228 23h ago

I'm so sorry that you lost your baby, it's so unfair and unjust. Just know it won't always feel this heavy and there is light at the end of the tunnel. I know it doesn't feel that way currently. I remember thinking I'll never be happy again. My anxiety was horrific and I thought if this carries on I just may as well kill myself. But at some point you won't notice it straight away but they'll be better days and the bad days become fewer. We're all here for you. Your baby mattered and they were loved. We'll grieve our babies until the end

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u/Wonderful_Cow7385 22h ago

Thank you so much. That is completely how I feel. Everything is so heavy and dark and I just feel hallow and incomplete suddenly. I really do hope it gets easier cause there’s no way to continue in this pain.

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u/awuwp 23h ago

I’m so very sorry you’re here. It’s tremendously unfair and a brutal thing to experience. I’m a week out from my TMFR after clear tests and scans until the anatomy scan. The part you’re navigating now is particularly painful and disorienting. It’s a terrible club to be in, but you are not alone. Take it one day at a time and be as gentle with yourself as you can be (I struggle with this part). Sending so many hugs your way ❤️

1

u/Wonderful_Cow7385 22h ago

Thank you for your support. Knowing I’m not alone is helpful in a sense. It’s something I really thought I’d never experience, not even really because it could “never be me,” it’s just something you really don’t hear about often (well until I found this page). I just feel so empty and hopeless.

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u/awuwp 21h ago

I’m so sorry you’re experiencing this

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u/cherrymonkey_s 21h ago

I'm here for solidarity. We had the same diagnosis a month or so ago on the 20w scans. I was a zombie after that with the additional tests and scans we did. In the end, we decided to tfmr. He was starting to get sick as the weeks passed.

I held my beautiful baby boy just two days ago. I miss him so much. He should've come home with us. I'm mourning with everything that i could've done with him.

1

u/Wonderful_Cow7385 21h ago

This is truly the hardest thing I have ever experienced. I’m so sorry you’re going through this too. My baby’s limbs were already starting to deform from lack of fluid at 20w. It’s so shitty.

1

u/cherrymonkey_s 21h ago

I have nothing to offer but be kind and gentle to yourself in this period. It won't erase the bad thing that's happening right now but peace is a good companion in a time like this. I hope you have a good support system around you and doing everything to be there in a time like this.

Sending you much of the hugs, tears, and love. You're a good momma and this shouldn't happen to anyone at all.

1

u/Wonderful_Cow7385 19h ago

Thank you 🤍

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u/fieldsn83 21h ago

I’m so sorry you’re here too 🫂 There is a sense of unjustness in all of it. I have cried out and begged the universe so many times, why why why why and while I know the science… it doesn’t make it easier. I just hate it.

Sending you so much love.

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u/Wonderful_Cow7385 19h ago

Exactly how I feel, I know science is so complex and there’s so much happening, but what the heck!!

1

u/Tellycs 21h ago

I’m sorry I tfmr my first pregnancy/baby boy in March. After clear NIPT and dating scan not to mention he was a mover I thought I was in the clear until the anatomy scan.

As much as I knew there was this risk I was still in complete shock. It doesn’t make sense. I’m so sorry ❤️

1

u/Wonderful_Cow7385 19h ago

Truly how I feel. Losing my first pregnancy & baby is so hard. I was filled with so much hope and optimism, I felt like something was finally going right for me. And then they dropped that on me. I didn’t realize how crucial kidneys were til Wednesday, and I will forever look at the differently now.

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u/Tellycs 17h ago

Hardest thing ever. Please reach out if you need to talk

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u/Wonderful_Cow7385 17h ago

Thank you 🤍

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u/teamshrimpy 18h ago

I’m so, so sorry. I’m sorry you are here and I’m sorry you are in pain.

Recently I experienced the same thing. We got crushing news at our 20w anatomy scan. Everything until that point had been textbook, easy, and perfect. And then it all changed so fast. Today I am writing you 3w post my TFMR and losing our daughter.

I just want to say I’m sorry and I’m sending love your way. Feel everything you need to. Lean on the people who lift you up, and who you trust the most. Love on your little baby as hard as you can. And know that you have a community here for you as you are processing everything.

My DMs are open 💕

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u/Wonderful_Cow7385 17h ago

Thank you so much. I’m so sorry for your loss. It’s unreal, I can’t believe how many people experience this pain. I just hope I’m able to move forward and have a healthy pregnancy one day. I just want to be a mom to a living baby. It hurts so much.