What to do after TFMR

[Bellesjp]

Hi everyone

Not sure if this is the right place to post but it didn’t feel right to post in the miscarriage section so hoping it’s ok in here 😔

On Friday I sadly had to have a tfmr at 12 weeks due to various serious abnormalities in our baby. They think he was a little boy 💙 I had medical management at the hospital which thankfully was over quite quickly and I got to go home that evening. I wasn’t sure if we’d strong enough to see him after delivery but we did and I’m so glad, the hospital gave us a little memory box to take home.

We’ve opted to have a post mortem done and they will test the placenta to hopefully find out the cause of abnormalities, since this wasn’t diagnosed prior to the tfmr. However they’ve said that this can take 13-14 weeks to get results back since the lab is being used for covid etc 😩

So I guess the point of this post is that I know it’s so early but I don’t feel like anything is going to make me feel better apart from knowing that I’m pregnant again 😞 but I’m terrified of trying again before we’ve found out the cause in case it’s something that’s likely to happen again. They’ve said I will have a follow up appointment at the fmu in 6-8 weeks but even that seems so far away. Has anyone else been in a similar position and did you try again relatively quickly? I feel so guilty for even thinking about it 😢

Hiya, I am so sorry you are going through this too. I sadly lost my daughter in august at 24 weeks due to a chromosome defect.

For me, the only thing I can think of is trying again and so we have already started, I was told to wait for a period to lose the lining but it is entirely up to you. I have read that they speed up your results if you are pregnant straight away. Our results were given to us following an amnio so we already knew what was wrong/cause and had met a geneticist so luckily we didn’t need to wait or have a post-mortem. We were advised to wait for genetics counselling but having had that, it was pointless as they just confirmed what we had already been told and there was no counselling.

Guilt has become a very good friend of mine so try to not feel it, as once you fall down that trap, in my experience, it’s hard to get out. I’m not that long down the road and am feeling it quite strongly but I would suggest ARC and the forum on there. Only women who have been through a TFMR are allowed to join and I’ve found it really helpful.

Sending lots of love xxx

Hi, so sorry for your loss. I had to have a tfmr boxing day 2020, I waited for my first period which they suggest and a negative pregnancy test which took about 3 weeks post tfmr. Then we started trying again.
I am currently 26 weeks pregnant with a little girl and all is looking great this time around. The scans are always nerve wracking but im so glad we kept trying it will be worth it. Hope you have some success and take care of yourself in the mean time ❤

Thankyou both for your replies and I’m so sorry you have both been through this too 💐

@Alwaysworried247 I have read about them speeding up the results too, tbh I wonder what they could actually do if it turns out there could be a chance of reoccurrence, wonder if it’s just a case of being more closely monitored. I feel like the hospital has left me a bit in the dark, when I went for my 12 week scan and it was discovered I would have to have a tfmr the doctor just said we’d discuss future pregnancies at my appointment in 6-8 weeks but I don’t feel I can wait that long. I have the bereavement midwife coming round tomorrow to sort paperwork for the post mortem so I might ask her. Trying to keep myself busy so I don’t just sit around feeling guilty.

I really hope you have some good news this cycle, have got my fingers crossed for you. I’m always on here if you need someone to talk to xx

@Curlymam88 that must have been so hard that close to Christmas. So happy you got your bfp again and all is looking well 💕

Looks like most people are advised to wait until after first period, wonder why they never said anything to me about when to try, all I was told was that at my appointment in 6-8 weeks he’d discuss how many cycles to wait! Think we will wait for negative test and then start again, think it will be the only thing that will make me feel remotely more positive. Just hope my cycles don’t get too messed up. I had a miscarriage a few years ago and remember them not being normal for a good few months after, I was ‘only’ about 6 weeks then as well 😞

Xxx

Sorry you're going through this. I had a tfmr and found out through CVS results that it thankfully wasn't anything genetic and we could try again.

I fell pregnant 4 weeks after the tfmr as honestly it was the only way I could cope at the time. I had another CVS and all was fine but I still worried throughout the pregnancy. Fetal medicine kept me on and I was closely monitored throughout with extra scans which I was grateful for.

I suffered from pnd after having my baby and I think it was probably too soon to try again, though at the time it was my main focus.

In your position I'd wait for results, I'd always worry that it could happen again. Speak to the hospital at your check up, I think mine was roughly the same time as I was pregnant again and told the consultant and midwife then. Ask if there's any way results could be sooner as you'd like to try again. Also check out ARC Antenatal Results and Choices who have a helpline and confidential forum.

I hope you're ok, look after yourself x

@Nooproblemoo sorry you have been through this too, I’m so pleased you were able to have a healthy pregnancy after that. I hope you’re doing better with your pnd now?

I really wish I’d pushed for a cvs after my scan so we’d know the cause sooner 😩 the fmu did give me the option but in a way that it wasn’t worth putting me through it as the end result would have been the same anyway. They had told me at that time that the wait time for investigating after tfmr was about 6 weeks so it was a shock to find out that it’s actually more like 13-14 weeks at the moment. My head was in a scramble and I didn’t even think about the wait at the time. Going to speak to the bereavement midwife tomorrow and see if she can help me with regards to trying again. Worried they might think I’m heartless for wanting to try so soon but all I can think about is being pregnant 😔 think I will try and push for quicker results, they did say that was for a complete report so wonder if we may find out more in the meantime maybe?

Xx

@Bellesjp how did it go with the bereavement midwife? X

@Alwaysworried247 thanks for checking in, it went ok today, she brought the paperwork round to consent to the post mortem. The results of that should be back within 6-8 weeks but genetics results could take 4 months 😔 at least we might have some results a little sooner maybe, she said she’d let me know as and when she hears. I’ll then have an appointment when all results are back to discuss. It was so hard to talk about our little baby being sent to be tested but I know it’s for the best 😢

I didn’t actually speak to her about when we should start trying again, didn’t feel like I could and I didn’t want it to come across that we were rushing into anything. I’ve started taking my conception vitamins again though so think we will just see how we feel when/if I ovulate this month. Maybe try but not try if you know what I mean and if it happens it happens.

How are you doing? Xxx

Hey @Bellesjp

So sorry to read what you've been through. Hindsight is a dangerous thing... we can't change the past, so try not to fret over your decision not to have a CVS (I found mine awful but we weren't allowed to terminate unless I'd had it....)

Don't ever feel like people would judge you for wanting to try again soon. It's the strangest feeling ever, isn't it? But it's so so common!! I was ready to try again within a couple of weeks (or so I thought, mentally). My body wasn't for a long time....

I would second the ARC forum or if you want something less anonymous, there's an amazing newish Facebook group called TFMR Mamas, run by Emma Belle who's gone through TFMR herself. She also has a great platform on Instagram and you'd be amazed how common most of your feelings are. TFMR is horrible and the worst thing I've ever been through, but at the same time I'm grateful I got to do it.

Hi @NoCallerID Thankyou for your message and so sorry you’ve been through this too 😞 can I ask if you did start trying straight away?

I messaged the midwife as have been reading online about people being prescribed high dose folic acid after having babies with brain abnormalities (which my baby did) and she’s said they will sort out a prescription for me but need to take it for at least 3 months. That feels like a lifetime but I guess it’s for the best. Maybe we will have some test results back by then too. Little bit miffed as if I hadn’t asked I don’t think they’d have mentioned that until my test results appointment in probably 4 months time. I guess they assume you don’t want to start trying straight away but honestly it’s all I can think about!

Thankyou I have joined the arc forum and been reading through some threads on there, not posted yet. It’s nice to be able to read through some people’s stories who’ve been in a similar situation, well not nice but you know what I mean.

@Bellesjp do not worry about wanting to conceive straight away, I honestly think it is so natural. We just need a bit of luck next time.

The service I received from the NHS after our TFMR was and continues to be none existent, so I’m not surprised the BM didn’t mention taking folic acid. I was 24 weeks and I didn’t hear from the hospital once I left and my community midwife sent me a text wishing me well 😂 I have to laugh as otherwise I’d be devastated at the lack of care.

I hope you are doing as well and can be expected, emotionally xxx

@Alwaysworried247 gosh that’s awful, especially with how horrible it is going through a tfmr 😔

I am still waiting for our little one to be sent for post mortem, was told he’d either go Friday or today which seems like such a long time doesn’t it, feel like they don’t do anything in a rush. Makes the wait even longer to find out what happened to him. The BM said she will call once he has gone for PM so hopefully she will and I can ask if she’s got the prescription for me as well. I’ve already started taking the higher dose using lots of the 400mcg tablets though as I anticipated they might not sort it straight away!

I feel like I’m doing ok as been trying to keep busy but it’s at night that I struggle as keep thinking things through. Back to work tomorrow which I am dreading.. have told 2 people and asked them to keep it to themselves as I think it’ll make me upset if anyone mentions it but get the feeling people know as have had a few messages asking how I’m doing 😞

Hope you’re doing ok xxx

Good luck with work! I am still hiding away and working from home. Sadly, due to how far gone I was everyone at work knew I was expecting and when I popped in the cleaner came up and said “how are you? Not long now till maternity for you but your bump has gone?!” I then had to explain that we had sadly lost her. I haven’t been back since 🤦🏻‍♀️ I’m petrified of seeing everyone but know I need to soon, as life does continue.

I hope the BM calls you soon, I can imagine the wait is dragging xxx

@Alwaysworried247 that must have been heartbreaking for you 😢 I don’t blame you for staying working from home. I can’t really do that where I work as they want everyone in the office, I’m hoping the thought of going in is worse than actually going there.

Yeah the waiting around is awful, and the thought of him laying there waiting makes me upset every time I think about it. Just want the post mortem etc to be over so he can finally be at peace 💙😞xxx

@Bellesjp I think you are right, I think the thought of it is worse than the reality and after a few days we will be back in the flow. I work in an office with lovely ladies so I know they would be super gentle with me, just need to take a leap and go in. I think I will try on Wednesday - I have counselling tomorrow morning so won't go in after that.

He will be at peace soon xxx

@Alwaysworried247 I hope so, glad your office ladies are supportive, I'm sure they will support you through going back in 🥰 my office is mainly men but there are 2 ladies who are the people I have told. The guys are lovely too just sometimes don't really know the right way to approach things and worried I might just burst out crying if anyone says anything to me. Think I will just go and hide in my corner and hope that no one speaks to me! Xxx

@Bellesjp I had complications with retained placenta, needed an MVA to remove the RPOC 8 weeks after delivery and then we started trying again, fell straight away, had a chemical.... repeat the same twice, push to be seen by RMC which thankfully took me seriously, another early MC on progesterone, then participation in a clinical trial in which I was diagnosed with chronic endometritis (not to be confused with endometriosis; it's an inflammation of the lining of the womb without any symptoms but makes full and healthy implantation basically impossible....) which was then treated and I fell pregnant straight away, now almost 29 weeks with a healthy baby as far as we know.

Call your GP about the folic acid, they immediately prescribe it, no issues at all. Just say you were told to get it from them.

@NoCallerID gosh you've been through so much, that must have been agonising 😢 so pleased to hear everything is going well this time though 🥰

How did you know you had retained placenta? Was it that tests did not go back to negative after? I'm paranoid about this as am still bleeding with a few clots but have heard that can last for weeks anyway so maybe it's just that

Have just chased up my bereavement midwife and our little one went up to great ormond st this morning for post mortem, hopefully we may have some answers after that and can finally lay him to rest 💙

Also I can pick up my prescription for higher folic acid tomorrow so at least a step in the right direction hopefully x

@Bellesjp I am so sorry for your loss. I had a TFMR in 2019, we made the decision to say goodbye to a little boy after our 20 week scan. I well remember the shock, devastation, guilt at having to make that decision and desparation to be pregnant again (and guilt accompanying that) and my heart goes out to you. I hope you get some answers soon
I would second the ARC forum and, if you are feeling really low, would suggest giving them a call. Jane and Sally are the most kind and non-judgmental women and they "get" it - they helped me so much at my lowest, including with making the decision to terminate and when my baby's due date approached.

Good luck with your return to work - I dreaded it too, but found that going back really helped.

We were advised to wait until I had stopped bleeding and had a period before TTC, I don't know why that was but it may have been because I was further along?
My little one had facial abnormalities as well. I was prescribed the higher dose folic acid which I started taking immediately. It took over a year to fall pregnant again, which was very tough, and a very anxious pregnancy, but DS2 is 7 months old now.

Thinking of you - please know you aren't alone.

Reading that back I phrased that badly, I should clarify that ARC didn't help me to make the decision, rather that they listened to me whilst I talked about my options and helped me come to terms with the decision!

Hi @newmumfeb21 so sorry you have been through this too 😞 am pleased you have your rainbow baby now, can imagine how anxious it must have made you in that pregnancy, I know I will be the same next time, if we're lucky enough to have a next time.

Struggling at work today, have been sobbing at my desk when people have asked did I have a nice time off, have only told 2 people so the others don't know. I did nearly go home but I guess I have to face it another day then so may as well stick it out 😢

Have joined the arc forum but not posted yet, might give them a call as well if I feel ready to talk about it properly x

@Bellesjp how are you? How was work? I tried to go back yesterday but only managed the car park! Going to try again next week.x

Hey @Alwaysworried247 sorry to hear you're having a tough time with going back to work. Don't rush back if you don't feel ready, are they happy for you to wfh?

I'm doing ok-ish, went back Tuesday and cried everytime someone spoke to me 🙈 they just kept asking if I had a nice time off (most people don't know what happened) so that set me off. Think they've got the message that I don't want to talk about it now and I've been avoiding people and getting on with my work. Think it's helped a bit having stuff to do rather than just moping about doing nothing like last week but still hard 😞

@Bellesjp Yes, my boss is happy for me to work from home but during my LM today he did say he was worried that the longer I left it the harder it might be. Someone, who has been through a TFMR too, suggested yesterday that I break it down more and just pop in for 15 mins, collect a folder and get use to walking the corridor without my bump and then go back a few days later building up each time. They said the fear is just seeing people out of my safe comfort zone and to just break it down gently. I think its wise so I am going to try tomorrow. Luckily half my office don't work on Fridays so it will only be a few people and two of them are good friends that I have already seen.

Sorry that you have been crying at work, the dreaded questions people ask when they don't know! I went in to work a two weeks after my loss as I needed to sign a contract and the cleaner came up asking where my bump had gone and if I was having a great time off. I was frozen to the spot and I think she felt bloomin awful after. I think you are right though, remaining busy is key otherwise the head goes wild.

x

@Alwaysworried247 that sounds like a good idea to go in for a short while then maybe see how you feel, will be good for only a few people to be there tomorrow, hope it goes ok 💕

I found that once I'd got through everyone asking about my time off and if I was ok they got the message not to ask and haven't mentioned since and I've been 'ok'. Managed not to cry the last 2 days at work so I'm taking that as a positive!

@Alwaysworried247 hope it went ok for you yesterday at work x