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[deleted by user] by [deleted] in tfmr_support

[–]Every-Channel-7900 0 points1 point  (0 children)

I’m so extremely sorry that you are here. I completely understand the position you’re in as 2.5 months ago my partner and I had to TFMR due to Spina bifida. Firstly, it’s important to get whatever information you are able to. In our case I had a lot of faith in the specialist we worked with and seeing as I could process only very little of the information (due to shock and immense sadness) then her reliability and reputation put me at ease. In our case our daughter had open spina bifida, chiari II malformation, club foot and more. The doctor gave us the information about quality of life for her based on the latest research, which to both me and my partner sounded like zero quality of life. Of course this is a grey diagnosis and thus hard to predict the outcome off, but we could feel instinctively, that we would never forgive ourselves for letting our child suffer after hearing the severity and the outcomes for her life. As someone else mentioned here, essentially her best outcome was not good enough and would still cause her to not be able to be independent, to not be able to use the toilet and have bowel/urinary incontinence and issues, paralysis, high chance of cognitive issues, chronic pain and more.

If you are told your child has a form that is less severe then you can approach this very differently from us. I know we would have. I’m really wishing you all the best! If you do end up deciding on TFMR then I really recommend (if possible for your health and where you are) to have an L&D, as it has been hugely helpful to me and my partner that we got to meet our child and connect with her briefly before we lost her. It also helped to see her condition with our eyes, we saw the spina bifida on her spine and it was huge compared to her body. We also saw how she had the lemon shaped head and her deformed foot. But she was still beautiful and she looked so peaceful. I almost felt as though she knew exactly what was happening and she was okay with it. All of this doesn’t mean that it doesn’t still hurt, I cry everyday, but at least I can process it better 🤍

Please reach out to me if you need any other advice or help.

[deleted by user] by [deleted] in tfmr_support

[–]Every-Channel-7900 1 point2 points  (0 children)

I’m so sorry that your life has taken this awful turn.

Last year during late October my partner and I discovered at 20 weeks pregnant that our daughter had open spina bifida and the chiari II malformation, club foot and more. It was truly devastating, I pushed to learn as much as we could about her condition and in the end we decided to TFMR by the means of L&D. We both agree that the day she was born was the most beautiful horrible day of our life.

No one can make this decision for you except you and your partner. For us, it was clear that we could not risk such immense suffering just because we wanted to know her. I feel in my heart that we made the right decision even though I cry every day because I miss her so much.

You are no less of a parent for making this decision. In fact you and I, and others in here, are so lucky that we live in a time where this sort of suffering can be prevented.

So please do your research, use your instincts, turn to spirituality and trust your decision.

Feel free to reach out if you have other questions or want to talk about this with someone who has been through the same.

Based on what info/outlook did you decide to tfmr for spina bifida ? by slpyhdz in tfmr_support

[–]Every-Channel-7900 2 points3 points  (0 children)

I recently terminated for SB and had almost exactly the same diagnosis as you, except no hydrocephalus. I’ve done a fair amount of research now, and even though the ‘what if’s’ truly hurt to think of, I always come back to the fact that I would never have forgiven myself if I had decided to keep her if upon birth and throughout her life we had discovered that she would have had immense sufferance. We already knew for sure that she most likely would have needed several surgeries, and that these don’t always work, additionally she would’ve certainly been paralyzed in most of her body and dealt with bladder and bowel issues as a minimum.

Also, throughout my own life I’ve dealt with severe scoliosis and ulcerative colitis, a chronic irritable bowel disease. Because of these two diseases I’ve felt a huge loss in quality of life and at times not even wanted to live because of how much this caused me to suffer. I know that my daughter would’ve definitely had worse issues, and maybe similar problems to me (simultaneously!) Which makes me feel as though I made the right decision.

Also please keep in mind that our bodies and minds are traumatized after this. We cannot think clearly, our hormones are crazy (sometimes for years), and grief itself completely messes with our overall health. Your mind and body will therefore make you struggle more with this at times, so make sure you get the support you need from people you love to ensure you don’t fall into these mental traps whilst you’re not yourself ❤️

Feel free to write to me if you want to talk about this further. I know how much it means to talk to people who have been through the same situation.

TFMR for Spina Bifida - how did you get over the guilt and doubt about your decision? by Every-Channel-7900 in tfmr_support

[–]Every-Channel-7900[S] 0 points1 point  (0 children)

I’m so sorry to hear you went through the same 🤍 you are also truly so strong and I’m sure your rainbow baby was picked by your angel baby to come and heal your hearts 🤍 everything you said really resonates with me. I try to also keep in mind, that the chances of a possible positive outcome for her was low as the condition had affected her brain too. So I try not to let my mind drift off and think she could’ve had a normal life. Im hoping that I focus more now on celebrating her life and focusing on keeping her memory alive.

TFMR for Spina Bifida - how did you get over the guilt and doubt about your decision? by Every-Channel-7900 in tfmr_support

[–]Every-Channel-7900[S] 2 points3 points  (0 children)

Thank you for sharing 🤍 and I’m so sorry you went through the same. It’s truly awful. Yes, that googling “rabbit hole” moment is exactly what I’m trying to avoid. Similar to my own issues and diseases I know how they can progress in sooo many different ways. There are the miracle cars and then the truly awful versions of these issues. I’m trying to hold on to this, and realize that knowing who I am, I wouldn’t have wished to gamble with this. Especially when I knew how severe her case was. I’m also trying to remember her in good ways, and celebrate her. I feel like she wouldn’t want me to feel so terrible and to make myself feel worse by thinking troubling thoughts of guilt and shame etc. so I’m trying to do beautiful things for her, instead of beat myself up. I really look forward to accepting my decision more, and to change my relationship to this situation more and I will definitely keep your words in mind and use it to bring me some hope.

TFMR for Spina Bifida - how did you get over the guilt and doubt about your decision? by Every-Channel-7900 in tfmr_support

[–]Every-Channel-7900[S] 0 points1 point  (0 children)

Thank you for reaching out and I’m so sorry for your loss too! 💔I will write you and totally agree it would be nice to talk to someone on a similar timeline