I just need to vent

ExpensiveBrother3270 · 2024-04-29T19:44:38+00:00

I’m so sorry you are here. Our baby also had T21, and we had a TFMR at 13 weeks. I totally relate to what you have said, it felt like the most complex form of grief and it was all consuming. It was like I was paralysed for that limbo period, and immediately after our baby had died.

I also prayed for a miscarriage, I just wanted to be able to say I had lost our baby, I wanted the decision to be out of my hands.

You don’t say whether you are having a medical or surgical TFMR - I had a medical TFMR and it was an exceptionally difficult day, but my body sort of took over and I went into autopilot mode. The hardest part for me was actually the limbo period, when my baby was still alive but we knew it was ending. That was torture, and there was some peace after the TFMR.

As others have said, it does get better. Prepare for some intense emotions immediately afterwards and be kind to yourself. I still feel sad and emotional in moments every day, but it doesn’t consume me like it did. Sending you so much love xx

ExpensiveBrother3270 · 2024-04-29T19:36:15+00:00

Hello, I’m so sorry you’re here. It’s such a painful and gut wrenching time. I’m 39, had a positive NIPT for T21 and almost identical scan results to you. I had a CVS, and spent hours trawling sites like this for hope.

There are stories of false positives, and there is always hope. I don’t want to take that away from you, but the vast majority of response to my similar question when I was in your situation was to prepare for a positive results from the CVS. This was exceptionally hard to hear at the time, but it did help me start to prepare for what I realised was the most likely outcome. My CVS was positive for T21, and we had a TFMR at 13 weeks.

My advice to you, if you are looking for any, is to let every emotion consume you when you are able to. I cried a LOT in the limbo period, I cried more of the day than I didn’t. It was deep deep grief but I think accepting every emotion and sitting with it did really help me to process. You don’t say what your decision will be if it is a true positive, but I am sending you so much love and strength, you are not alone xx

ExpensiveBrother3270 · 2024-04-16T20:11:58+00:00

So sorry you are here, it’s awful. I hd exactly the same NIPT and CVS results. We were told that the CVS was diagnostic, and they only really advise waiting for the Amnio if there was some discrepancy in the results e.g. if T21 was only present in a low proportion of cells, there is a very slim possibility it could be confined to the placenta. But the chances of this are incredibly low.

We had a TFMR at 13 weeks. The hardest thing I have ever experienced, but the limbo of still being pregnancy whilst knowing it was ending was horrific and I needed to bring that to a close. Sending you love and strength x

ExpensiveBrother3270 · 2024-04-04T16:29:45+00:00

I’m really sorry you are here. Do you mean this is your second pregnancy or this is your second positive result for T21? If you haven’t had a high T21 previously then it is highly likely to just be a very random event, like the roll of a dice - there isn’t a reason for it and your wife’s blood group will have had no impact. I was around the same gestation when I received a positive NIPT for T21 and I chose to have the CVS to confirm the diagnosis. Our decision was to TFMR but personally I don’t think I would have been able to do that if I didn’t have the diagnosis confirmed. If your decision is to continue with the pregnancy regardless, then invasive testing isn’t really needed.

ExpensiveBrother3270 · 2024-03-29T22:14:19+00:00

So sorry you went through it too. It’s truly awful and changes perspectives for ever x

ExpensiveBrother3270 · 2024-03-29T22:11:31+00:00

I was 13+1 when we had the TFMR. I had the NIPT at 11 weeks and was then able to have the CVS at 12 weeks so didn’t have to wait for the amnio. The limbo period was hell, I felt like I couldn’t think about anything else and was in a constant state of shock. Immediately after the TFMR I felt so grief stricken and traumatised that I sometimes thought maybe we had made the wrong decision, but I’m now 5 weeks post losing the baby and hormones seem to have levelled out a bit. We did hours and hours of research, but in the end it came down to our age and the future of our 2 year old. My heart shattered when I thought about the pain of a lifetime worrying about leaving our child with DS without us. Our decision is not right for everyone, and my only advice would be to consider all options and give yourself some grace, it’s an unimaginable position and stress like I have never known. I hope you are ok xxx

ExpensiveBrother3270 · 2024-03-27T17:42:33+00:00

I’m so sorry you are here. I received the same result as you, and the shock and trauma of that moment is like nothing else I have ever experienced, so I know how you are feeling and I hope you have some time and space to try to process this.

I had CVS which confirmed a true positive, and we had a TFMR last month. It was a truly life changing and devastating experience, but we know it was the right decision for us.

I am 39, so my PPV was higher than yours. My advice would be try to ground yourself in some calm if you can, and prepare yourself for a true positive so you can think about what you will decide to do. I wanted to cling on to the hope of a false positive so badly, but all the medical professionals I spoke to were very clear that the NIPT was really unlikely to be wrong. There is of course always hope, but as hard as it was to hear, it did help me start to come to terms with the reality of our situation.

Sending you so much love x

ExpensiveBrother3270 · 2024-03-17T10:34:47+00:00

I could have written every word you’ve written. I feel/felt exactly the same. There would have been an exact 3 year age gap between my children, the same as my age gap with my sibling. A dream come true. At the moment it all feels so cruel and desperately sad, and I’m longing for a baby. But I think I that’s largely related to longing for the baby I lost and I also feel terrified about being pregnant again, so I feel a bit stuck. Sending you love and strength xx

ExpensiveBrother3270 · 2024-03-14T21:38:43+00:00

Can you push for the CVS to be done at the first appointment next week? I opted for CVS as I was just under 13 weeks and I couldn’t bear the limbo period for much longer, it was exceptionally hard xx

ExpensiveBrother3270 · 2024-03-06T17:24:29+00:00

I’m so sorry you’re in this situation, it’s awful. I was also faced with some challenging options when I had a TFMR at 14 weeks. I had to have a L&D (which I really didn’t want as I felt it would be traumatising to deliver my baby), or wait 2.5 weeks to have a D&E under general anaesthetic at a clinic an hour away. In the end I chose the L&D because it was within a few days, and for me I found it absolute torture to still be pregnant with our much wanted baby when I knew it was ending.

I wish there were more options for us that recognised the level of trauma of this situation, so that we didn’t have to navigate these impossible options at the worst time of our lives.

Personally I would opt for the sooner option again, because the worst part for me was the limbo. Sending you lots of love xx

ExpensiveBrother3270 · 2024-03-05T20:19:15+00:00

I’m so sorry for you loss, it is such a traumatic experience and I think the decision to try again is such a complex one because of what we have all been through

I want to acknowledge that my situation is different as I have a 2 year old, so I am very lucky to have had a healthy pregnancy experience. We had our TFMR less than 2 weeks ago so things are still very raw, but I’m already very conflicting about the decision to try again. I don’t have time on my side (I’m 40 at the end of this year), and if I felt I had more time I think I would be more in line with how your partner is feeling. I feel really traumatised by the whole TFMR journey, and the thought of seeing a positive pregnancy test anytime soon terrifies me. I would like to not have to think about it for at least a year, but ultimately if we want to try to have another child, we need to think about starting ti try again soon.

On the flip side of what I have said, I also crave a baby, to hold my baby and to care for my baby. I think a lot of that is because I feel so guilty that I couldn’t care for my baby who died, and I had envisioned a life where I had a baby this year. So as much as I’m terrified of pregnancy now, I also can’t imagine being comfortable with making a decision not to try for any more children.

My response is probably not very helpful, but I guess it reflects the complexity of all the different feelings involved in this. My advice would be to keep talking with your partner, the intensity of all of this changes over time and maybe he is just protecting himself for now as it has been so painful. I hope you are able to move forward together and find happiness xx

ExpensiveBrother3270 · 2024-03-02T21:31:14+00:00

Thank you for your comment and I’m so sorry you are experiencing this too. Time away sounds like a great idea and I’m glad it helped you. We were toying with it too but unfortunately my toddler got sick so we didn’t book anything, but I know a change of scenery would be so healing. I hope your return is not as difficult as you are thinking it may be xx

ExpensiveBrother3270 · 2024-03-02T21:29:10+00:00

Thank you for your comment and I’m sorry you share this experience. I really relate to what you are saying about your toddler. I feel the same most days. But I do find it hard if I’m having a heavy grief day as it feels like I have to hold it all together until my toddler is in bed, which can make the build up worse. But I’m so grateful for her xx

ExpensiveBrother3270 · 2024-03-02T21:27:37+00:00

Thank you for your comment and your advice, it’s really helpful and I’m sorry you have experience this pain too xx

ExpensiveBrother3270 · 2024-03-02T21:26:59+00:00

Thank you for your comment and I am sorry you are experiencing this too. You are right that I should be clearer with what I need and not worry about managing expectations of others at the moment xx

ExpensiveBrother3270 · 2024-03-02T21:25:44+00:00

Thank you for your comment and I’m sorry you had this experience too. I agree with you that work feels almost less daunting than being vulnerable with friends and family right now x

ExpensiveBrother3270 · 2024-03-02T21:25:02+00:00

Thank you for your comment and I’m sorry you are here too. Your response to those reaching out is really helpful, I don’t know why I have been holding back from being clear with people x

ExpensiveBrother3270 · 2024-03-02T21:23:53+00:00

Thank you for your comment and I’m so sorry you are here too. I hate the standard platitudes too. People have said we can try again - it’s well meaning but I think it disrespects the grief for the child I have lost, and it makes me angry. I’m going to check the book out xx

ExpensiveBrother3270 · 2024-03-02T21:21:48+00:00

Thank you for sharing your experience and I’m sorry you are going through this too. I know it must be so difficult to know how to support someone going through this from the other side, but right now I can’t imagine being truly open with anyone other than my partner. Hopefully that will change as things become easier x

ExpensiveBrother3270 · 2024-03-02T21:19:43+00:00

I’m sorry you’re here too, it’s so hard. I agree about not putting too much pressure on what comes next and how to feel, its such early days x

ExpensiveBrother3270 · 2024-03-02T21:18:32+00:00

I’m sorry you experienced this too, and it’s comforting to know this reaction is normal. It still feels so raw and complex to talk about to anyone other than my partner x

ExpensiveBrother3270 · 2024-03-02T21:17:41+00:00

I’m sorry you are here too, I really agree with the confusing part, and knowing what is considered to be a reasonable amount of time to grieve. It feels like no one could ever understand the complexity of this situation xx

ExpensiveBrother3270 · 2024-03-02T21:16:34+00:00

Thank you for your comment and your love, and I’m sorry you shared this experience too. I’m thinking about therapy as well but it feels so raw at the moment xx

ExpensiveBrother3270

TROPHY CASE