TFMR

[jennys9221]

We’ve had to make the heartbreaking decision to tfmr. We are 16 weeks with baby boy and found out he has a number of severe defects and abnormalities. We have opted for medical termination and go in tomorrow morning to begin the process with the first tablet. Then back on Wednesday to be admitted for the delivery.

We both know this is the right decision for our baby, but I’m absolutely terrified of what the next week will involve. I’m trying to prepare as much as I can (if that’s even possible).

I have a few questions I’m hoping someone who has also sadly been here with could maybe answer

How did you feel after taking the first tablet physically? I’m finding it really hard to be at home and the thought of just coming home after to wait feels impossible

What did you pack for your stay in hospital?

Did you choose to see your baby afterwards? Give his age and defects I’m not sure if this will help or haunt me

Thank you so much in advance ♥️

I am so sorry you are going through this. I had the same experience with my baby last week, who was also 16 weeks with a number of abnormalities.

I didn't have any pain with the first pill, just a bit of spotting. In the hospital, it took about 4 hours for me to deliver and about 45 mins of pain like really bad period pains. I was about to ask for morphine and the baby was delivered.

I didn't think I wanted to see the baby and then I changed my mind and I don't think it made me feel better or worse. The baby was so small you barely notice the defects. The midwife also offered to describe the baby to me first. I think I'm glad I saw it.

I think I was in hospital about 7 hours in total. I just took sanitary towels, pyjamas and change of clothes, toiletries, snacks and juice and a laptop to pass the time.

I also contacted ARC and got access to their forum which has been a good support. Please feel free to DM me.

Hi, I don’t have any answers for you but I’m hearing myself up for this to happen to us over the next few weeks. Our 12 week scan revealed a NT of 8mm and a cystic hygroma. I am due the results of a NIPT tomorrow hopefully and a CVS is being carried out on Tuesday but I’ll be honest, the moment I heard 8mm I lost all hope. It’s been a really long two weeks waiting for a follow up appointment and I’m reaching the end of my tether if you know what I mean?

I have started preparing myself for the TFMR. I’ve bought a couple of oversized nighties, I’m going to take a cardigan to wear over and some jogging bottoms too. Maybe some flip flops or slippers for going to the loo. I’m wondering if it might be helpful to take a little speaker and get some calming music? My hospital has a special room on the labour ward/delivery suite for this sort of situation, with a pull out coach for the partner to sleep on if we need to stay in.

I’ve found it pretty hard to find much specific support for TMFR, other than general baby loss like the worst girl gang ever. If anyone has any recommendations I would appreciate it. I’m aware of ARC.

I will be thinking of you tomorrow, I hope it goes as well as it can and please come back and update if you feel able.

Hey, so so sorry to hear you are going through this too. 2 weeks ago I went through the same thing. Little one was 13+4.
The first tablet was psychologically harder than it was physically - we went home, I didn’t sleep well but had no pain, just spotting.
About 4 hours after the second tablets (inserted by nurse) I passed baby. I was given pain killers with the second tablets and more as the pain got worse (though it only felt like bad period pain). Accept all the pain killers they offer - it will help and there is no shame in it. I wasn’t prepared for my waters to break, I found that quite a shock at such an early stage (I didn’t think there would be much) but it was a bit scary.
I had no pain at all passing and though I didn’t want to see baby, it was kind of unavoidable as I was on my own at the time, so be prepared that might happen.
The worst part was waiting to pass the placenta, I had to have a procedure to help with this which was awful (but necessary).
All in all I was there for about 10 hours total and pushed to be discharged that evening as I was exhausted and couldn’t rest there.
Its not something I would wish on anyone, it’s really difficult and sad - but there were two other women in seperate rooms going through the same as me that day, it’s sadly very common.
Give yourself time, and make sure you rest as much as possible. I suffered with insomnia for a few days after which I think was due to all the drugs, but it’s amazing how quickly my body has adjusted since.

The Arc website is brilliant for advice/info, as is Tommys.

so sorry again, and if you want to DM me please feel free - I’m still “in” it and happy to talk xxx

Thank you so much for the replies. I’m so sorry you all went through this too ♥️

We went into hospital last Monday fully expecting to go ahead and take the first lot of tablets… then the geneticist and doctors suggested there was a really small (but still potentially possible) chance that the CVS result was showing abnormalities in the placenta and not the baby, as apparently our result was “mosaic”. After throwing in this doubt, they offered us an amnio which we accepted.

So… we’re now in another waiting period for results. Realistically, it’s still going to say our baby has severe abnormalities. They also did another scan which picked up a new heart defect, which sadly does back up what the cvs showed, but we agreed that we had to know 100% that this was the right choice and couldn’t face a lifetime of doubts.

One week of waiting down, two more to go. Just trying to keep going as best we can, knowing that there’s a 99% chance that in two weeks we will back again to actually take those tablets this time

I'm sorry you are going through this OP. Have you given birth before? I made the same decision with my 1st pregnancy which had patau syndrome. Sorry if this is long and I do hope you don't need to go down this path, but these are things I wish I'd known beforehand. Sorry if TMI also.

I was only 12 weeks, and abroad, so possibly the reason things were done slightly differently. I was admitted to the hospital, and had 4 tablets inserted vaginally. No oral tablet beforehand, nor any 2 day wait. It took maybe 6hrs before contractions started and I was kept overnight for monitoring and to speak to the genetic consultant etc.

Before they put the vaginal tablets it, go to the loo and make sure you have a massive pad on. If possible, lie in bed for as long as you can and let the tablets dissolve. When you do use the toilet, you might see a white paste come out, part or even a whole tablet come out. It will still work. I took night time maternity pads with me, but often the hospital will have something bigger- like a massive adult incontinence pad. They might recommend walking about and moving after a certain time. This will help the cervix open.

A side effect of the meds can be diarrhoea, nausea, vomiting and a high fever. This isn't an allergic reaction, just very common side effects. My face burnt up and I looked like a beetroot. Ask for paracetamol or stronger pain relief to help with the fever and any pain. The symptoms do resolve though.

This was my 1st pregnancy and being only 12 weeks, for some reason, it never occurred to me that waters would break! I wish I'd been wearing a massive pad! Take at least a few large, loose, comfy full brief underpants and an extra pair of PJ's.

My scans had shown many birth defects. A large hernia and a cleft face- not just a cleft lip, being just 2. I was also only 12weeks and had decided beforehand not to look. Years on, I'm still content with my decision on this. The staff 'might' offer to do hand/foot prints or keep things in a memory box for you.

The following day, I was feeling physically ok. No pelvic pain, no fever etc and walking about. Just felt a bit fragile. Another thing I wasn't expecting, was being asked what plans I had for the foetus. Again- I'd honestly never thought about it till I was asked. The baby had histology/autopsy done, but they wanted to know our wishes after that. My choices were to pay and organise a private funeral or have the baby given back to me to bury myself at home. A 3rd option was that he'd go with other early pregnancy losses to the local cemetery to be cremated after a chapel ceremony, and the ashes put into their 'Garden of angels.'

Once again, I really hope you don't need to go down this path, but more than happy to answer any questions you have. You might find ARC can be helpful too. Just remember that you did nothing wrong to cause this, and you aren't alone going through this. ❤

Antenatal Results and Choices (ARC) – non-directive information and support before, during and after antenatal screening (arc-uk.org)

Sorry to hear that you are still in limbo OP, that must be so tough, but I entirely understand wanting to be 100% certain.

I really hope that you don’t have to go through what we have also, but I echo all other posters if you do - and I forgot about it, but yes, I wasn’t ready for all the questions around what we wanted to do regarding cremation etc afterwards. I wasn’t actually allowed to be discharged without first seeing a chaplain and filling out certain forms - had no idea about this and it was all very intense especially when you just want to get home. So maybe think about those choices now, so you have an idea of what you want if it should come to that - I’ve got my fingers and toes crossed for you that it doesn’t though.

sending so much love xxx

We had the amnio results back last Thursday which has led us back to tfmr. Been a long wait but we’re pleased we did the final test to get all the answers. Booked in to go take the first tablet tomorrow and then to be admitted on Wednesday. Will have been seven weeks since this whole nightmare first started as I’ll be 19 weeks. Devastated and feeling so guilty for feeling somewhat relieved it is finally coming to an end.

Hi Jenny. I feel for you, and I felt the same. I didn’t end up having a cvs. We had a NIPT and it came back high risk for Edwards, and I felt relief too. Relief that it was likely that and I didn’t have to endure any more agony.

Going back to your original questions, I found it a little bit upsetting to actually take the tablet even though I knew it was the best thing for us. After that I felt completely normal. I ended up being in hospital from 9am Thursday to 8pm Friday so I was glad I’d taken a few nighties, pants, a fresh T-shirt and jogging bottoms to wear the following day.

I also took some herbal teas, biscuits etc which came in handy. Take some maternity pads too.

I decided to see baby, my husband wasn’t sure but he did it with me. I was 14 weeks so a lot smaller but I’m glad I did it. I can’t remember an awful lot other than the little tiny hand.

The midwives were so lovely, caring and respectful. They offered to try to take hand and foot prints, photos etc. Have you thought about a name?

If you have questions just shout and I hope the next few days are as kind to you as possible. It’s going to be tough but I can tell you time is a healer, I’m 2.5 weeks down the line now and whilst I still have a cry most days, I’m feeling better and trying to look to the future 🩷