TFMR - what would you do

[Lixon]

We had results back from a cvs on Monday confirning t18/Edwards' syndrome. We have decided to terminate, although it is a horrible decision to have to make. I'm going surgical under GA and have been told the soonest I can be seen by BPAS is next Friday.

I've since found a private consultant covered by my health insurance who could see me earlier (maybe this Friday or next Monday).

Getting this done quickly is currently my priority but someone made a comment to me yesterday about not underestimating BPAS aftercare which would be lacking if done privately. I assume there might also be a difference in terms of being offered to be seen the baby (which I understand is done at BPAS) etc too.

Does anyone have any thoughts/experience of either system for tfmr?

Thanks x

I'm so sorry you have had these results. We had a tfmr at 22 weeks after a diagnosis of T18.

I would speak to both about your options and aftercare. It shouldn't be too dissimilar. My understanding, and I may be very wrong, is that there is not always the option to see your baby after a surgical termination so if that is something you want please make sure you double check.

My tfmr was quite different as it was after 20 weeks so I was induced, laboured and gave birth. We spent time with dd2, had a service for her and a plaque in our local sands garden.

Have you spoken to arc? They are brilliant and will be able to help a little more I think.

Be kind to yourself and take each hour as it comes

Thank you Kitty for your lovely response. I'm so sorry for your loss, I think the way you handled it sounds beautiful - losing your daughter at such a late stage must have been so traumatic.

For anyone else finding themselves in this position I went private in the end - it all happened very quickly but I got a consultant appointment on weds and then had the surgery yesterday at the Lindo wing in St Mary's in Paddington. I was given the option of seeing the 'tissue' after the surgery but the extraction means the baby does not look like a baby anymore. This was the bit I was most traumatised by but I felt this option was likely to result in the least trauma/mental anguish for me do selfishly decided to proceed without seeing her.

The staff were amazing and although they don't offer counselling etc directly I wouldn't hesitate to recommend it - the experience should have been traumatic but I felt so well looked after at every stage and didn't even see a pregnant woman at any point.

I haven't spoken to arc yet but definitely will. Bizarrely although I was very upset before the procedure I haven't cried since, I assume it will hit me at some point though...

I'm glad you were well looked after.

I think I was in shock for a while. With dd2 we had a long time waiting for results etc. With ds (who was a mmc at 14 weeks) it was much more of a shock and I hardly cried at all. It hit me a little bit a few weeks later but tbh almost a year later I think I'm still in shock and haven't cried properly.

I had specialist counselling after my tfmr and that helped me hugely.

I'm so sorry that you've been through such terrible times Kitty, you really have dealt with more than most people could even imagine and seem so strong now.

could I ask who the specialist counselling was through - someone recommended by arc or privately found?

I managed to cry a bit yesterday and felt emotional today so feel like I'm working through it a bit hopefully. It's such a weird feeling - I've effectively been pregnant since last August with my second miscarriage and then this pregnancy but have nothing to show for it. Am hoping slowly telling people will force me to deal with it too.

So reassuring to hear other women going through similar emotions, I had a tmfr 4 weeks ago and have just felt so de-motivated by everything. It was IVF, we had been trying for nearly 5 years and unbelievably got pregnant on our first transfer, however found out there were major heart abnormalities at 13 weeks. We were lucky in being able to have D&C, you ladies who have had to give birth - my heart goes out to you.

Alongside of this I've been applying for jobs frantically because I don't like where I'm at and I've had 3 interviews in last 4 months and haven't got any of them. The last interview, I thought I had s really good chance at and when they told me I hadn't got it, I just felt like my life fell apart. Clearly it was the trauma of the whole pregnancy and tmfr that was underneath the emotions but wow, I feel like I'm dragging myself off the floor at the moment. I recognise I'm super vulnerable, I think the decision that we all had to make was life changing and so traumatic. My husband and I are Christians as well, so had the added dimension of considering all the spiritual stuff that goes along with termination.

I think it just takes time and in those dark moments, it's good to share and cry with others like this forum!

Hi Tawny, sorry to hear that you're going through this as well and that this was the outcome after 5 years of trying and IVF. I'm not surprised you're demotivated and feeling vulnerable. Was this your first pregnancy? We have been trying for 2.5 years and even that process caused a very mild social anxiety to spiral into something more debilitating - I don't think people realise how much of a mental toll the whole process is (I certainly didn't), even without the added trauma of a tfmr which as you've said is such a life changing/traumatic decision.

Have you made any decisions about continuing with the ivf? do they have any way of screening embryos for genetic/structural issues if so?

I think I am doing ok and maintain a good part of that is that my work and boss have been so supportive and so I don't have to worry about any of that so I can only imagine what you are going through with all of the added stress of a job search and not being happy with your current employer. Again, someone going through that alone without the added stress of TTC/IVF would be massively stressed so please don't underestimate how much pressure you're under at the moment and take it very easy to the extent you can.

Hi Lixon, thanks for your message. I agree that it is good to have nice employers and although I don't particularly like my job role I have an awesome boss and colleagues so thankful for that. In answer to your question, we don't have any other children and this was my first pregnancy. Because we are slightly older, we opted for pre-genetic testing but the heart condition was never picked up. We had our follow up appointment with gynaecologist yesterday who has referred us to genetic counselling even though she doesn't think it was hereditary condition, I'm assuming there is some risk with any future pregnancies, so we're wanting to get some extra information. We have one frozen embryo left but tbh the chances of that resulting in pregnancy is about 28% so I'm working on getting used to it just ending the 2 of us (+fur baby). In some ways, the not knowing what's happening with our future and the waiting game is worse, if it doesn't work at least I can kind of move on in life and work on accepting life with the 2 of us.

I was sorry to read your experience of a prior miscarriage, that seems too cruel. I also hear you on the social anxiety front, I have lots of theories about how that is heavily linked to the expectations of what it means to be a woman and as such, a mother.

By the way, have you accessed counselling yet? Would you recommend it?

I'm sorry I just realised I forgot to reply to this. How are you getting on?

I haven't sought specialist help yet, although I am keeping arc's number on standby and have details of a psychiatrist who specialises in this and won't hesitate to call if I feel I need it. I have only heard good things about arc. I was already seeing a cbt counsellor for my anxiety so will continue to see her and like knowing that I have someone to talk to. I think I will find it hardest if we don't conceive again quickly as I'm remaining positive at the moment given it was quick after our last miscarriage. I imagine coming up to the due date/anniversary will be especially hard.

I am keeping everything crossed that things work out for you with the final embryo, 28% sounds like a fighting chance to me. what a heartbreaking process though, I really do feel for you and your husband. I know what you mean about moving on and uncertainty almost being the worst- I am tempted to just decide to adopt or make do with several massive dogs (and frankly I've always liked puppies more than babies) to avoid ongoing uncertainty but age is on my side if not my husband's and I'm not quite broken yet so we'll try for a bit longer and see what happens.

I have a colleague st work who is 43 and has been trying unsuccessfully for a second for some time and with 3 miscarriagesi. Before I went off work she was 8 weeks pregnant and I am really hoping that it works out for her. If not I will lose a bit of faith/optimism - that anyone gets and stays pregnant when so many people struggle so much and for so long amazes me..