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TFMR t-25

Allthequestionsallthetime · 20/11/2016 09:54

On Friday we went in for a scan not expecting anything particularly bad. We knew our daughter had one textbook club foot, one mild one and there was something going on with one hand. But as my bloods hadn't indicated any issues and everything else about her was great, the consultant had said she thought it was a mild case of getting caught up in loops in the womb (I forget the proper term). However on closer inspection a month later (Friday) they said they thought the hands and feet were caused by arthogryposis and that they couldn't see her stomach which implied she wasn't drinking, worst of all her chest muscles haven't developed properly so she won't be able to breathe outside the womb. There is also too much amniotic fluid, which would cause problems if we carried on with the pregnancy.

So we went from a couple of physical defects to non survivable problems. We have booked in on Monday for the injection, with an induction on Wednesday. I don't want her to suffer longer than she needs to and I am trying to maximise my recovery time (I am self employed and only have two remaining projects this year, both week after next, on which I have now handed over 99% of the work to colleagues, meaning I can rest for most of Nov and Dec).

My husband has been amazing. But I am terrified and completely destroyed. I'm quite frightened by the scale of how awful I feel. I'm not having suicidal thoughts exactly but I do feel like I would rather die than keep living through this and while I don't think I would do anything I am quite frightened of being left on my own because I just don't know. I cry all the time. This was my first pregnancy so I have no idea what to expect from being induced and the idea of asking someone to stop my daughters heart is the worst thing in the world, even though I know it is also the right thing. I have always been so proud of that little heart, and have enjoyed listening to it so much.

I don't know what to do with myself. It would be really helpful to hear from anyone who has lived through this process so I have a better idea of what to expect, how to prepare for it and some idea of light at the end of the tunnel.

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Orchard23 · 21/11/2016 19:53

Firstly, I'm so sorry.

I had a tfmr in 2014 after numerous abnormalities incompatible with life were discovered at the 20 week scan. I had the injection too as my son was 23 weeks by the time we had the test results and sought various opinions.

It was a dark time in our lives, but time does help. Take each day as it comes and accept help and support wherever you can.

My best advice would be to get in contact with ARC (antenatal results and choices) before you are induced on Wednesday. They were great, and have lots of helpful literature on their website. They can talk you through what to expect and what options you have - things you may not have considered.

For instance, i decided I wanted to see and spend time with my son after he was born. The midwives were great and took hand and footprints and some pictures for us. I treasure that little book, and although I don't look at it daily like I used to, there is comfort knowing it's there.

Maybe the thought of seeing your daughter is too painful - instead you may want to take a blanket that the midwives could wrap her in and a teddy to leave with her. It's little things like that you remember years on.

Thinking of you, stay strong, lean on each other, & the light will gradually come back into your lives xxx

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KittyandTeal · 23/11/2016 15:11

I have also had a later tfmr withthe injection at 22 weeks. Out dd2 had T18 with many, many unsurvivable issues.

I would echo ARC, they are amazing. And sands as well are brilliant.

We decided to spend time with dd2 after she was born. We have photos and prints in a memory box. We had her cremated and held a service, she has a plaque in our local sands garden, our ds who we lost at 14 weeks also has one there.

I'm going to be brutally honest, the injection was one of the hardest things I have ever done. I almost passed out with the emotion and to be honest don't remember a huge amount. It was more painful that the amnio we had which surprised me. I also hadn't been warned that they keep you there a few hours after the injection to check it has worked. I didn't know this and found waiting and the second scan to confirm she'd died utterly traumatising. Then I hit a weird high where I was fine and happy and laughing. My screening midwife said it was really common, your body and brain go into overdrive and you just don't know what to do.

The induction was pretty standard with pessaries. I ended up with a morphine drip. It wasn't more painful than my labour with dd1 but it was more intense and I was utterly emotionally spent by then.

My mental recovery went fairly well, I saw a specialist counsellor and I made big progress. That has gone backwards since loosing ds but I would probably be ok if we'd not got pregnant and lost him within a year of loosing dd2.

I don't want to scare you but I do want you to have some of the information I wish I'd had.

The best advice I was given, and can give you, I'd to take it a second at a time, be kind to yourself and you will find a new normal.

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