r/tfmr_support • u/Winter-Travel-5465 • 2d ago
Seeking Advice or Support Tfmr
Hi everyone ❤️
I’m 16 weeks pregnant with my little boy, and I’m having a TFMR on Wednesday. At 13 weeks, we found out that his bladder was enlarged, and with every ultrasound, we received more difficult news. He has megacystis, likely caused by a partial blockage of his urethra, and his kidneys have been increasingly affected. We also found out about chromosomal abnormalities, and after speaking with the doctors, we were told that his prognosis is very poor.
This is my first baby, and making this decision has been the hardest thing I’ve ever had to do. I love him so much already, and I never imagined I would have to say goodbye to my little boy before getting the chance to meet him. Even though we made this decision based on the doctors’ advice, I still struggle with guilt and wonder if things could have turned out differently.
For anyone who has been through a TFMR, does the guilt ever get easier? How did you cope with the grief and get through the procedure? I feel so alone right now and would really appreciate some support from people who understand
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u/New_Bat7223 2d ago edited 2d ago
I am so incredibly sorry you and your husband are going through this - it is completely unfair.
I had my own TFMR just a little over a week ago at 27 weeks, and it was the absolute worst day of my life, even harder than the actual delivery. All I remember is crying from the moment it began until it was over, and the empty feeling of going home afterward. Knowing that I had to make the decision to stop my beautiful son’s heart was utterly heartbreaking, and honestly, I still don't know how my husband and I got through this.
I recently read another mother's story, and it brought me some comfort. She wrote that despite all the 'what-ifs' and what could have been, choosing this path means you refuse to gamble with your baby’s quality of life. That resonated so deeply with me. I chose this because I did not want my baby to suffer, and I know you and your husband are coming from the exact same place of love.
Even with a deeply supportive husband and family, it is so hard not to feel completely isolated. I feel alone too. So far, this TFMR support group has been a total lifesaver - just having a safe space to talk helps. I highly recommend looking into dedicated support networks as well. While I haven't taken that step myself yet, I am strongly considering it. The social worker at your hospital can help connect you, and there are wonderful organizations out there like Bears of Hope and Red Nose.
Please know that even if it looks like I have it together, I really don't. Most days, the grief is so heavy that I feel like I won't make it, and I know I will never be the same. This was my first pregnancy, and he will always be my firstborn - nothing will ever change that. But I try to comfort myself with the thought that I let him go out of pure love - I am carrying this suffering now so that he never has to.
My heart and thoughts are with you, your husband, and your beautiful little boy. Please look after each other, and lean on one another to stay strong during this incredibly difficult time. 🩵
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u/Winter-Travel-5465 2d ago
Thank you so much for sharing your story with me and for your beautiful, comforting words. My thoughts are with you, and I can only imagine how incredibly difficult this must be, especially being so far along in your pregnancy.
I understand what you mean about having an incredibly supportive husband but still feeling so lonely in all of this. It is such a strange and heartbreaking feeling. And it is not only our own grief that we carry, but also the grief of everyone around us who was just as excited and looking forward to meeting our babies. Sometimes it feels like I am carrying everyone else's emotions on my shoulders on top of my own, and it can become so overwhelming.
I want you to know what a strong mother you are. Your little boy will always be your firstborn, and nothing will ever change the love you have for him. I truly believe that our babies know only love through us, and that choosing to protect them from a life of suffering is an act of love, even when it breaks our hearts in ways we never thought possible.
Life doesn't always turn out the way we imagined, and I know none of us ever wanted to be part of this kind of community. But I believe that, one day, we will discover a strength within ourselves that we never knew existed. I don't know what life will feel like after Wednesday, as I am still facing that day myself, but I know that women who go through something like this carry a strength that they never asked to have. We shouldn't have had to become this strong, but somehow we will keep going, one day at a time.
I hope you continue to reach out to people and accept all the support you can get. You don't have to be strong every day, and you don't have to carry all of this alone. Thankfully, I will also be getting support from counsellors, and I hope it helps us both navigate the grief in our own time. There is no right or wrong way to grieve, and we don't have to have everything figured out right now.
Please be gentle with yourself. You have been through something no mother should ever have to experience, and you deserve all the love, patience and understanding in the world. I hope that, with time, the memories of your beautiful boy will bring you more warmth than pain, and that you will eventually find little moments of peace again.
Thank you for reminding me that I am not alone in this, even when it feels that way. Sending you and your husband so much love. My thoughts are with you both, and I hope we can both find our way through this, carrying our little boys with us in our hearts forever ❤️🩹
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u/UserName_SE 2d ago
I’m so sorry you are here.
I had my TFMR due to severe heart defects about 3 months ago at 23 weeks. The first two months were so so hard. After that it got a tiny bit lighter. I went back to work 2 days after which I do not recommend, if you can take actual time, do it.
I still struggle and wonder what if surgery would’ve worked great and it all turned out great but based on research and speaking to parents who went through it, it wasn’t the likely outcome. You have to trust you did what was best for your baby and your family.
As for the procedure, I felt like I disassociated and powered through, I think everyone is different. Give yourself some grace, it’s extremely unfair to have to go through.
Sending you strength as you move forward. 🤍
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u/Winter-Travel-5465 2d ago
Thank you for sharing your story with me. I’m so sorry you had to go through this too. It breaks my heart that any of us have to make these impossible decisions out of love for our babies. I hope that these past three months have given you a little more time and space to heal, even if the pain is still there. I can only imagine how difficult it must be to live with the what-ifs, but I hope you can find comfort in knowing that you made the decision you believed was best for your precious baby. Thank you for reminding me to be gentle with myself. I’m trying to take everything one day at a time. Sending you so much love and a big hug. ❤️🩹
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u/NecessaryArtistic845 1d ago
It does get easier, but I’m sure you’ll miss him every day. I miss my son every day, too. My advice is to just let yourself feel it all. Talk to your partner, talk to a friend. Rest. You’ll be back on your feet eventually. I’m sorry friend, you are not alone.
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u/Salty-Cheetah-6463 2d ago
Hello, I also went through the procedure at 20 weeks 2 months ago due to the same condition - LUTO. It is the lowest time of my life. We were devastated once we found out wt 16 weeks, spent the next 4 weeks going through procedures like bladder tap, amniocentesis to rule out chromosomal abnormalities and improve the baby’s chances. We also got to talk with urologists and nephrologists to understand the quality of life once our baby gets born. In the end, we decided this is not the life we want for our baby boy.
It was extremely difficult the first 2 months. I cry everyday, I have no motivation and I don’t even wanna wake up. I miss being pregnant, I miss my baby boy a lot. I forced myself to be busy, go outside and walk, organize the house, but still break down once I get unoccupied.
I suggest you write down the reasons why you decided to let the baby go. It can be on your phone, you can read it every time you feel doubts. You’ll feel a lot of guilt and blaming but you have to remind yourself that this decision is made out of love, because we don’t want our babies to suffer and we are taking on their pain.
I only started to feel better last week, after I had my post surgery checkup with my OB. She was supportive of me and my husband trying again and said we’ll do an early anatomy scan next time. This lets me have hope again.
Wishing you strength on this very difficult time, feel free to message if you need someone to talk to. Hugs xx
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u/Winter-Travel-5465 2d ago
I’m so incredibly sorry that you had to go through this . I know how difficult those conversations with the doctors are, and how heartbreaking it is to learn about a condition that so few people have ever heard of. It almost feels like lightning has struck you out of nowhere, because everything seemed so random and unexpected. One moment you’re looking forward to your future, and the next, everything you imagined feels like it has been taken away from you.
Thank you for your advice about writing down the reasons for our decision. I think that is such a beautiful and helpful idea, and I will definitely do that.
Today is my last day being officially pregnant, as I took the first tablet to stop the pregnancy. I honestly don’t know what to do with myself or how to prepare for what comes next. I’m going to miss being pregnant so much. My belly has already grown, and I find myself looking at it in the mirror, knowing how much I will miss it. Having my little boy inside me made me feel less alone, and I’m terrified of what it will feel like when he is no longer with me in that way. I had become so comfortable and safe in my pregnancy, and I was so excited for everything I thought life had in store for us.
I truly hope we can both heal from this, and that no mother ever has to make the impossible decisions we have had to make. I hope that, with time, we find strength in ourselves that we never knew we had, without ever forgetting our beautiful boys. I hope you give yourself permission to heal, that you never blame yourself for what happened, and that one day you can look towards the future with hope and excitement again. You deserve that happiness just as much as anyone else.
I’m wishing you and your family nothing but love, healing and happiness in the future. Sending you the biggest hugs. And please know that the same goes for you.if you ever need someone who understands, even if it’s just a stranger on the internet, I’m only a message away. We may never have wanted to be part of this community, but I’m so grateful we don’t have to face it completely alone.
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u/EffectivePear6472 2d ago
I’m so sorry you’re going through this too. I also had a TFMR my first pregnancy for kidney issues. It’s easy to feel guilt because you’re put in the impossible position of having to make a “choice,” but the reality is you’re taking on this suffering so your baby doesn’t have to. He will only have ever known your love and warmth. Hugs ❤️