T21. Scared & indecisive about TFMR

I have no real solid advice here, as my situation was super different, but what I will say, is that being honest with your partner is always the way forward. (You know, unless domestic abuse, but I hope that doesn't apply to you.)

Hey, sending love. I just had a tfmr at 20 weeks of my baby boy Leo as he had severe ventriculomegaly and possible hydrocephalus. We are so heartbroken 💔 but know it means he will not suffer, we have a little girl who is 15 months and we had to think about her quality of life (and ours). I feel so selfish, like people could judge our decision and know I’m hurting so much now but I’ve saved Leo a life of potential surgeries and worry/pain. I can’t offer much advice as I’m still in the thick of it all and being harsh on myself but please just be open with your husband! Hugs!

Thank you to both of you. Your story actually really helps @Sophie H as that's it. I feel so guilty and expect judgement. But also that's not a good reason to live a whole life I don't want to. Thank you for your kind message and you are right @Emma I need to have a proper talk with him sooner rather than later. Luckily he is so kind and supportive always. I just also value his opinion and would hate for his heart to break over this. X appreciate the responses

Hi.. Firstly, sorry that you are in this position and having to make these most difficult decisions. There are so many steps to this process, whether you decide to continue with the pregnancy or not, my main advice would be to deal with each step as it comes. I think you’re doing the right thing to get the amnio and I would concentrate on that for now as the next step you need to go through, and try to put out of your mind the worry about how to tell other people and how they’ll react. As you get the results, it’s very possible that you’ll have a gut reaction as to what to do next. You absolutely do not have to have it all figured out before you talk to your partner too. You can share that you’re worried, or feel conflicted with the decision that you both made before and see how he reacts to that first. He may be thinking exactly the same as you about the situation and it could open up the door to talk more and come to a decision together…

…and you’re right that you absolutely need to think about your other child and how this will impact their life too, and your lives as a family. There is so much to consider and my last piece of advice would be to not let anyone rush you into a decision. Whether that is the medical staff, your husband or your family/friends. If you need an extra week to come to terms with the situation then take an extra week. It’s amazing how time can bring extra clarity and change your perception of a situation. I was offered my TFMR procedure on my birthday! I had a firm idea that I didn’t want to have the date of my TFMR etched into my head forever so delayed the procedure for about a week. In hindsight, I’m so pleased I made this decision as I took the time to come to terms with the decision and it felt like a chance to say goodbye.

Thank you @LMK this is great advice. I think for now I'll try not to obsess and over think things and then after the amnio hopefully I will have more insight and clarity like you said. Also good advice about not rushing. I think I do feel the pressure to decide now because of course the baby is growing but a week or two isn't a massive difference in the greater scheme of things. Thank you so much.

Oh and one more thing - if you’re not in touch with the charity Arc already, please visit their website and reach out to them. They are an amazing charity supporting parents through making these decisions. Through Arc I discovered a podcast series called Time To Talk: TFMR . There are episodes specifically about T21 diagnosis and it may really help you as you’re going through this next step to listen to other people’s experiences. Take care of yourself ❤️

Thank you @LMK ❤️

Hey, I’m so sorry you find yourself in this incredibly difficult position. I terminated my very much wanted pregnancy in May last year following a diagnosis of T21. Like you, I felt the urge to have every possible test to confirm the diagnosis even though the NIPT was pretty certain. I couldn’t live with the fact that it was still just a ‘chance’ rather than a diagnosis. I think it’s important to remember that any decision you make comes from a place of love - terminating a pregnancy does not mean you love or want that baby any less. T21 is often a condition that is romanticised, where others say how loving and kind individuals with T21 are. This absolutely can be the case, and I’m not trying to deny that, but there are also so many other elements to weight up. It’s a spectrum so it’s not possible to know how severely your child would be affected, and that uncertainty definitely contributed to us making the decision to terminate. I absolutely second the recommendation for the website

ARC and also the Downs Syndrome Association to support and inform you. I understand the fear of being judged, but ultimately nobody can understand this situation unless they’ve been in your shoes, and the decision has to be what’s right for you and your family. If you’d like to talk, please message me. Sending you positive thoughts as you go through this ❤️

Thank you @Jules and also I'm sorry for your difficult decision and loss. I had the amnio yesterday. I agree and over the last few days I have come to a pretty much definite decision to terminate after the diagnosis comes through. It's not the life I wish for my baby or my 2 year old. Also not for my husband and I. It's really sad but I'm at peace with the decision now. My husband and I are on the same page now too. Thank you to all of you that commented it really helped me a lot. I'm sorry you have also all had to endure heartbreaking decisions. ❤️

Always here if you want to talk as I’m 3-4 weeks out, still emotional most days but here if you need someone who is going through something similar. We are still awaiting some amnio results which should be back next week hopefully as it’s been 3.5 weeks. My hospital referred me to a loss counsellor and I started on Thursday and just use it as a safe place to talk and cry about my little boy and how I’m feeling. Early days but worth exploring if that’s available at your hospital too. Also ARC support is available!

I just wanted to again thank all of you that commented on this post. I don't think you understand how much it helped when I was feeling so isolated and undecided. It allowed me to consider my options fully and from both sides. One of you told me I needed to take my time which of course seems obvious but I realised I was panicking and this really put things into perspective. I ended up getting the official diagnostics from the amnio as I suspected I would. My husband and I had many in-depth discussions and realised we actually were more on the same page than I realised initially.

Continued.... We opted for termination and on Monday 9th September we had medical termination. It was draining and so sad but I feel like I got the closure I needed and got to hold and say goodbye to our little boy. We named him Harvey. We took home a memory box and took some beautiful pictures of him. It's now been almost 2 weeks and I'm already back at work and feeling better. People were (mostly) supportive. A few friends have distances themselves a bit and felt we made the wrong decision. However they will come to terms with it and in the end we did this for us and our future and the future of my 2 year old. I don't have any regrets and don't think I will! If any of you ever want to chat or need support please reach out ❤️

I’m so pleased you were able to get some support from this thread, and also from most people in your circle around you. It’s such a unique set of circumstances that nobody could understand unless they had to go through it themselves. Thinking of you and your precious baby Harvey 💕x

I need this thread and thanks to all who shared their story. I just got my amnio test back today (positive for t21)... my nipt was low risk and no history and signs until our anatomy scan at 21 weeks. Avsd and nasal hypoplasia changed our future. Now confirmed, we are leaning to tfmr to salvage our marriage and keep the best future for our 2 year old. It's absolutely devastating and it hurts so much.

@Jamie I'm so sorry for what you are going through. I only saw your message now. Hope everything has gone okay for you?? How are you doing? Our stories are so similar. Feel free to message me at any point. ❤️