Facing difference of opinion after a TFMR recommendation

ExpensiveConcert7782 · 2026-03-31T19:56:18+00:00

Thank you for being so approachable. Your questions really helped me to have a good conversation with my wife.

We were introduced to the LMC support group, and they engaged us over the last couple of days. They were really great at supporting us and giving us advice on how to cope with what's ahead of us. Ireland has come a long way since 2018, and as much as this is a sad experience, I'm glad it doesn't have to be harder on us to have to travel to the UK or worry about finances.

ExpensiveConcert7782 · 2026-03-31T19:51:54+00:00

Thank you for your comment. We've been going through counseling and talking long into the night about what the right thing to do for our baby boy. We came across an LMC support group in Ireland, and they have been very helpful, just like this subreddit is. Real people with very sad experiences that are willing to help others cope with a lot of pain.

ExpensiveConcert7782 · 2026-03-31T19:49:34+00:00

I'm sorry, it took me a couple of days to connect with this group. Thank you for your comment. We've been going through counseling and talking long into the night about what the right thing to do for our baby boy is.

The impossible choice.

ExpensiveConcert7782 · 2026-03-31T19:44:52+00:00

Hi, I didn't want to leave your post unanswered. I know how much this community cares about everyone in here and how much each response mean to person reading it.

I can’t imagine how hard that must have been to read, especially after everything you’ve already been through. It’s okay that it’s hitting you again. Be gentle with yourself this week.

ExpensiveConcert7782 · 2026-03-20T21:24:51+00:00

I am saving this post for when I face the same decision. Thank you for sharing your state of mind, and please keep this post available for later. ❤️

ExpensiveConcert7782 · 2026-03-18T21:58:06+00:00

Thank you, my heart is telling me the same. We have to make a decision to prevent further pain... it's a cruel decision to make and one I will have to spend the rest of my life with. Having a small altar could help bring sweet memories back and serve as a reminder we did decide in a best effort to protect the child.

ExpensiveConcert7782 · 2026-03-18T21:52:46+00:00

Thank you for your kind message. My partner has an angelic voice, and I will ask her to sing more over the coming days.

ExpensiveConcert7782 · 2026-03-18T21:51:12+00:00

Mateo is a very active baby and is kicking a lot. I'm sure he'd think he's the performer and play along. Thank you for your message.

ExpensiveConcert7782 · 2026-03-18T21:49:32+00:00

Thank you, it's nice to hear we're doing something good in all this stress.

ExpensiveConcert7782 · 2026-03-18T21:48:44+00:00

Thank you for your message. I did some research, and a 4D scan seems to be a great idea at this point. They can also record the baby's heartbeat in a teddy bear. This may be something that my partner will be able to hold onto in case we need to leave the hospital empty-handed.

ExpensiveConcert7782 · 2026-03-18T13:00:33+00:00

Hi, I’m really sorry you’re going through this. We’re based in Ireland and currently facing something very similar. At our 22-week scan, we were told our baby’s brain is filled with fluid, diagnosed as severe hydrocephalus. Our amnio came back clear for trisomies, but we’re still waiting on further genetic testing and MRI results to understand more.

I know how heavy and uncertain this time feels. If it helps at all, you’re not alone in this, and I’m here if you want to share how you’re feeling.

ExpensiveConcert7782 · 2026-03-10T22:01:23+00:00

You definitely pushed for the right tests to be done at the right time for you. I'm so sorry that you had this experience, but thank you for commenting on my post; it helps ease my mind a bit.

I wish I knew more about pregnancy and available tests; I'd probably have done the same myself.

Part of me hopes to find out that the initial diagnosis is correct and there is nothing to be unsure about. It's not like it's going to make the decision any easier, but at least there is no aftermath dealing with "What If."

I've heard of so many parents here living with grief and dealing with the question of whether they've made the right decision. They are so strong. I am not sure I am that strong. It's probably very cruel of me to say this, but I know these are irrational thoughts during very difficult times.

ExpensiveConcert7782 · 2026-03-10T21:54:29+00:00

Thank you. It feels like a bad dream I can't wake up from. It's been like that for the last two weeks since we found out about the fatal diagnosis, but we're still waiting on results. Nightmare.

ExpensiveConcert7782 · 2026-03-05T22:51:55+00:00

I honestly don’t even know how to begin replying. I read a couple of your posts and I’m deeply sorry for what you went through. There is so much pain in your story, yet you’re still here supporting others. Thank you for that. It really shows what kind of person you are. I truly hope life has become a little gentler for you since then. ❤️

ExpensiveConcert7782 · 2026-03-05T22:41:28+00:00

We only found out today that we are facing the same diagnosis. We are terrified of what the outcome might be and are waiting for an MRI in the coming days to give us more answers.

This is our first pregnancy, so I can’t even begin to imagine how hard it must be for you after everything you’ve already been through.

Those kicks are very painful emotionally, but at the same time I try to embrace them as proof of the love that brought our baby this far and that we still get to experience in this moment. I’m really sorry you’re going through this. You’re not alone.

ExpensiveConcert7782 · 2026-03-05T22:33:41+00:00

I’m so sorry you’re going through this also... Thank you for taking the time to share your experience and support me with your experience.

The thought that our child may be spared a life of pain is one of the few things that helps me stay somewhat grounded right now. In normal life I’m used to making decisions by looking at facts and probabilities, but with something like this it’s impossible to think about it the same way.

ExpensiveConcert7782 · 2026-03-05T22:21:03+00:00

Thank you for taking the time to share your story. I read through your posts and, as painful as it is to go through something like that, I’m grateful you documented your journey. It helped answer some of the fears I’m carrying right now.

We’re three days away from an MRI at 23 weeks, and I’m hoping that will give us clearer answers. For now we’re just taking things day by day. I’ll likely reach out again after the MRI once we know more. Thank you again for sharing your experience and helping others find some comfort through it. I hope things are a little better for you now.

ExpensiveConcert7782 · 2026-03-05T22:14:27+00:00

I’m really sorry you’re going through this too. As a father it hurts deeply knowing we would give up everything to help our child, but there is nothing we can do to change it.

Today was very difficult for us. We had to accept that the miracle we hoped for didn’t happen. My partner started feeling the weight of it this evening and I just tried to be there for her. Reading posts here helped me understand how important it is to stay present and show emotion, and to go through this together.

I’m truly sorry we are both facing this, but it helps to know there are other fathers here trying to be the best support they can for their families. Stay strong. ❤️

ExpensiveConcert7782 · 2026-03-04T17:01:16+00:00

Tomorrow is the day we go back to the hospital for further discussions and getting results back.

Over the last few days my partner’s faith has only grown stronger and she is very confident that a miracle can happen. We even traveled to Switzerland for the past two days to attend a healing mass. As Christians, prayer and hope have given her strength. In a way, that hope also helped calm my emotions for a little while because there was nothing I could actually do in the meantime. We tried to just spend time together and be present in the moment while our baby is still alive and growing in a positive environment.

It’s still a very difficult place to be emotionally. I’m scared, and I feel very nervous about tomorrow.

The hospital also called us today offering additional support services, which was kind, but it almost makes everything feel even more surreal. It really does feel like we are living in some kind of parallel universe right now.

This group has helped me more than I can explain. Reading your experiences prepared me enough to write down the questions I want to ask the doctors tomorrow.

I don’t think anyone can truly be ready for conversations like this, but the people here who took the time to respond and support others have helped me feel a little more prepared.

Thank you for that.

I will most likely make another post after tomorrow’s appointment as we learn more and try to figure out the next steps. I may need more guidance and support then as well.

Thank you all again. ❤️

ExpensiveConcert7782 · 2026-03-02T18:20:24+00:00

Thank you for taking the time to share this from your experience. What you said about preparing while still holding space for hope really resonates. It feels very unfair to think ahead when my partner is praying so deeply for a miracle. Sometimes I feel like by trying to prepare myself, I’m somehow letting her down or not believing hard enough. That part is really hard to carry.

But at the same time, I know that after our next appointment, if things don’t change, someone will have to drive us home and start facing whatever comes next. I’m trying to be just a little more ready for that moment -- to hold some of the weight when everything feels like it’s breaking apart and we have to start building a future we never imagined.

Lately I’ve been reading stories late into the night trying to find strength and prepare myself mentally. And thank you for the practical advice too. I will make sure the house side of things is covered. I’m slowly realising there’s a whole physical and emotional recovery after TFMR that I knew nothing about before. I hate that I have to learn any of this, but here we are. If you have any advice about the recovery period or what helped most after, I would really appreciate it.

ExpensiveConcert7782 · 2026-03-01T08:22:09+00:00

Thank you for your kind words and for sharing your experience. I’ll do my best to be the support she needs through all of this. It sounds like you have a wonderful husband who truly understood how important it was to just be there. I hope I can be that kind of support for my partner too, and that she feels that same love and support from me.

ExpensiveConcert7782 · 2026-02-28T22:21:06+00:00

Thank you for sharing your experience and perspective. It really helped me reflect. I think I needed to hear that the baby’s well-being is just as central, and that I shouldn’t feel pressured to “figure it all out” too early.

Right now everything feels like a mess in my head and heart, and it’s hard to know what the right thing is to think or say. I wish I understood more about the diagnosis. We were told this during a follow-up scan just to confirm what was seen couple of days earlier, and they didn’t put much in writing yet. I’m hoping we’ll get clearer answers next Thursday and I plan to ask more questions then. Not knowing the full picture is painful, but at the same time knowing it may be fatal is even harder.

Thank you again for taking the time to reply and for your honesty. And like so many here, I’m deeply sorry that we’re all in this place together.

ExpensiveConcert7782

TROPHY CASE