TMFR options

[BleakTimes22]

Hello. My husband and I received recent news of an abnormality picked up on the 20 week scan, and confirmed at the Fetal Medicine Unit. Based on the consultants comments at the time pointing to dire probabilities and possible options to consider - including termination - my husband and I researched and debated all weekend. However, on confirming our desire to terminate the pregnancy for not wanting our child to suffer, the hospital have stated that the legalities need to be considered, and said that because they cannot confirm a severe disability is almost certain, they can only rule in favour of a "social termination" rather than "medical termination". What this means is that the hospital will pass us on to a private organisation to continue with the termination - which in itself delays the process and pushes us closer to the 24 week deadline. My problem here is that I am deemed a high risk pregnancy and so would be more comfortable in a hospital environment prepared to deal with any eventuality. Also, I want to deliver and hold our baby rather than go down the surgical or other routes. I have heard nothing but terrible things about Marie Stopes and BPAS who treat TFMR mothers as though they are on a conveyor belt or using this as means of contraception. I am so stressed. Can anyone confirm that they were able to TFMR in a hospital despite perhaps not being classed under Classification E, i.e. an anomaly that will be fatal to the baby or cause severe disability?

So today was the injection. The slick-looking doctor scanned my belly to confirm gestation (wow was it painful seeing my baby touch their head on the monitor and wriggle around), then went over the case once again. He brought a few more doctors/midwives in the room to witness/assist, and proceeded to prep the needle. Of course, I had no intention of watching my baby being injected with poison on the screen, but my husband thought it would be wrong to make this decision and then shun away from it, so tortured himself by watching. Despite being told it would take 2 - 3 minutes and would not be painful, just uncomfortable, it took more like 15 minutes because of the position of the baby, was painful, and the doctor gave me running commentary so I had the 'joy' of picturing it all. Nice. Afterwards the doctor said with a big smile, "Right, all done, and the good news is this is highly unlikely to present in future pregnancies." He did however say they would be doing a post-natal array to confirm all. We were ushered into a small, dimly-lit room where my husband broke down and shook with the pain of it all. I too cried. I felt physically weak after a week of fighting for this awful moment and moments to come. I am now back in bed and seem to be coming down with the flu - not great considering the energy I need for the next part to come. I'm numb. I keep replaying in my mind my child touching their face on that screen. I wish I could switch it off. Such a cruel experience.

Thank you @bluesky for suggesting that charity. I looked it up earlier while waiting for the awful injection.

@UnclePastuso I appreciate the support. Fighting for this experience has really drained me. I'm not ready for the next part

I am so sorry to hear about the pain you are in. Sending love to you both x

Thank you @bluesky.

I read earlier of a woman who had a similar experience to me, but four years ago. She said she recently had a dream of her son as she imagined he would look now, saying, "Don't worry Mummy. I'm always with you. It's okay." That sort of dream would crush me. I cried as I read that. My love goes out to all those who have been through this or who are going through this.

@BleakTimes22 try to remember your did this for your baby so they didn't suffer.
It's so incredibly hard but you did the right thing and your being very strong.

Only a little more to go now lovely, just a little longer. We are all here. You aren't alone.

I along with others will be thinking of you tomorrow. Pls look up the tommys fb group (it's totally private) and people really get it there.

💐💐💐 make sure you do something when this is all over to mark your baby. I planted roses (for each of mine) and ended up with a rose garden.

Thank you @pitchforksandflamethrowers . I believe I will feel better once I get past the hurdle of labour, see my child, and start the beginning of closure on the matter. I mean, I don't believe the matter will ever really be "closed" for me; I will think on this day forever from time to time, but I can begin to accept what has happened and work through it once I get past the last part of this awful experience.

Thank you for all the support. I will let you all know how things go once I have gone through it.

So I was called into the hospital yesterday evening, started the induction via pessary shortly after, and eventually, after a most terrible labour, delivered the baby 9 hours later. The one thing I can say is that the staff were absolutely amazing from beginning to end. I couldn't have asked for a better experience of this terrible event. They cuddled me, told me not to worry, that my husband and I didn't reach this decision alone, and that everything would be okay in the end. It was traumatic seeing my baby at the end of that hellish labour - so beautiful, so formed, yet not there - but strangely brought me some peace. Looking at the baby in my arms, wrapped up in a lovely blanket knitted for such babies born in that hospital, I knew at least the baby didn't have to suffer as would ultimately have been the alternative. We were given a memory box, funeral arrangements discussed, and now back at home we can finally grieve and accept what has happened in the way we feel best. Life continues around us of course which I found odd driving through the city centre today - a reminder that time waits for nothing and no one. I hope in time I can look at the contents of that memory box that now sits on a shelf in my room, and not burst into tears. I will perhaps frame one of the items in it and stick it among the other family photos so it is known the baby is gone but not forgotten.

I want to thank you all on this thread for the kindness and support shown. Without this community I would have surely fallen to bits. Wishing you all peace and joy in your own lives going forward xxx

@BleakTimes22 ah love. I'm so glad you were looked after in this very very darkest of times.

I wouldn't wish it on my own worst enemy. You made the choice only a mothers love would allow, even if it meant breaking your own heart in the process.

If it helps I didn't look at my boys box for a long while (don't push yourself). I count the birthdays and so many years on and I can say that one day it wont feel like you want to drown or stop swimming.

Please get counselling- specialising in this area. Sadly plenty of councillors trained in this niche. Something that made my heart sad.

I'm sorry you have joined us in this crappy boat, there are so many women right now who are with you right now in spirit. I know it doesn't seem like it right now, but when I lost my son I was randomly crying on a park bench and a old lady (maybe early 80s) gave me a hanki and told me about her baby that gained her wings before she was ready. It's so not spoken about, but there are so many of us.

It helped to name my little boy, if you haven't already it's worth considering. Saying his name felt like breathing air. You won't ever forget but how can you forget someone you have loved so much.

Don't stop believing in rainbows and be gentle with yourself xxxxx

Thank you @pitchforksandflamethrowers

We have already named our baby, a name we were considering all along really. It felt right to go with what we were leaning towards from the beginning really. Also, I realise you are totally right. This is clearly more common than I thought, evident just from the little the midwives shared with my husband and I.

My husband suggested therapy funnily enough. He thought it might help him process all for one. I think it might also help us to communicate on this matter as he has said very little on it since witnessing the traumatic event. I'll have to look into this.

We did discuss tonight whether we would do a CVS in our next pregnancy at 11 weeks or so. My husband heard the 1 in 100 chance of miscarriage and immediately said no. I don't think he can handle anymore pain. I, on the other hand, would rather know earlier than go through labour ever again to bring a dead child into the world. I don't know. It's opened up a whole new realm of worry for us going forward.

One step at a time I guess. As you said, I need to keep believing in those rainbows, and that they can happen to us xxx

I'm so glad you did. I nearly didn't give my little boy a name but I now see it was a gift.

I had a amino with my most recent birth and at the "peak" of risk and all went well and no miscarriage.

I like you because of my history wanted to know asap and we were lucky with the results. Very lucky. Chances are if anything is picked up at 12 weeks because of what's happened you would be referred straight to the Harris birthright centre (by any normal hospital - not your local one who are arse covering fools it would appear) and they do these things day in and out and my consultant said he hasn't had one of his aminos lead to a miscarriage as of yet (been practicing a long time - he was fairly old) so I don't know if that helps or not. If you do have to do that, rest rest and drink water and no exercise after for a bit. But I'm crossing my fingers you wont ever have to go through that ordeal and all will go as smoothly as these things can after such a devastating loss.

Tbh I would avoid your local hospital like the plague and go anywhere else but there. You can chose where you give birth, and I would exercise that right. Honestly I'm so angry your local hospital did this to you. You deserved better.

Re husband keep talking men try to be strong and eventually meet breaking point.

Well done, just know your little one must be so proud to have such a brave and strong mother.

Will think of you op 💐

I absolutely will be avoiding my local hospital despite their last efforts to rectify my experience. I just cannot be left out in the cold ever again, taking on unnecessary battles with a trust that should be on my side.

I also will absolutely be heading to the Harris Birthright Centre should we decide to go ahead with a CVS in the future (likely if I'm honest because this experience would just kill me if I had to repeat it). I'd have to check their personal stats to reassure my husband, but I'm convinced they'll be good. Anyway, I'm thinking ahead, perhaps too far ahead. There seems many hurdles before then like ttc, supplements, constant pregnancy tests and early weeks of worry. I'll take a deep breath and see what tomorrow brings.

If I'm brave, it is only because I draw strength from those who have given me wise words such as yourself @pitchforksandflamethrowers . I only hope I get to do the same for some lost soul one day who finds themselves in our shitty boat.

Xxx

To all on this thread, I just want to say a huge thank you. I gave birth to our beautiful daughter on the 2nd December following a TFMR and the messages on this thread have really brought me some comfort. I only wish I had read them before having to go through it all, but I've only retrospectively been seeking out support. ♥️

@BleakTimes22 have you had your follow up consultant appointment? We have ours in February (which feels like a lifetime away!) and I'm wondering what will be discussed...

@BleakTimes22 checking in to see how your getting on ? It's pitchforks under another name (I change it periodically for security)

@whippeywhippet ahhh congratulations. My rainbow baby was a December baby. It's very much a bitter sweet feeling I will admit. Hope your doing ok and it's never to late to process the loss of a child. I will say that many many years on, it is more manageable but I think of my boy often. The hole in my heart is still there but I like to think that's because my heart formed a special space for him to live in.

Hope if anyone stumbles across this post (like I did in the months post losing my sweet boy) please remember. You have to go through, to get past the grief. As odd as it sounds. We are cheering for you, keep swimming and your not alone.

I'm not religious but I truly believe we will meet them all again. And think of all the stories and adventures we can tell them about when we do ❤️

@whippeywhippet depends on if your ttc or expecting again. Mostly they will run though any tests they want to do. Mine did a range of what caused the loss, what they will do if you fall pregnant again (progesterone, many many scans and probably extra scans on the heart) ect.

@hourbyhour101 so sorry I worded that completely wrong. Our daughter was my first pregnancy and the TFMR was earlier this month and I gave birth to her at 25 weeks. So it's all still a very new path to navigate but I really really hope for a rainbow one day. In fact that's why I'm so eager for the appointment as every fibre of my body wants to TTC straight away but I feel I need to wait for the appointment. I'm then wondering if they will suggest higher folic acid and then say to wait trying TTC for a few months. I know that's probably wise seeing as it was only earlier this month but the urge is so strong.

I really appreciate how you write and word things though, it's so so lovely. I too believe we will meet them again and im not religious either. We told our daughter all our relatives who had passed on - who to look for when she reaches peace, now I see white feathers in random places when I'm thinking of her, It's really comforting to me. X

@whippeywhippet firstly please don't apologise - I read that wrong and I'm so sorry I would have worded that differently if I had know it had been so recent 💐

And secondly that urge - I hands down know what your talking about and it drives you absolutely up the fucking wall.

What helped me is being proactive - so start reading "it starts with a egg" it's a good book even to read if nothing as heartbreaking has happened and for anyone who's trying to conceive. A lot of the advice is about preparing your body for pregnancy so starting to take high dose of folic ascid now, CQ10 high dose I took 500grams and baby aspirin for 3 months before ttc. The baby aspirin was a precaution (until it was confirmed that was the issue) as we latterly fount I have a issue to do with my blood (sticky blood) which turns out I have 😔 that can lead to losses. The test takes a very long time to come back so I took it not knowing (and consultant said it wouldn't do any harm) and was confirmed with blood work later on (hope that makes sense)

I also made DH (at the time) - long story take the male ttc vitamins 3 months before trying again. Something worked clearly.

Please oh please be kind to yourself. It feels like a itch you can't scratch and it's so fucking frustrating. I'm crossing my fingers for you lovely 🌈

@hourbyhour101 honestly don't worry at all ♥️

Thank you so much for sharing, I've just ordered that book, proactive is exactly what I want to be! I have the pregnacare before conception tablets for him and her to start taking, I don't think that is considered a high dose of folic acid? In my pregnancy with our daughter I was prescribed 5mg of folic acid but only from 10 weeks. Is this something you can only get on prescription?

The baby aspirin and CQ10, is this available to buy yourself too? Again I was prescribed 150mg aspirin before due to my BMI being higher.

Sorry for all the questions, I really do appreciate it!

Yes all available at boots. I didn't get the higher dose folic acid on prescription just double dosed. Baby aspirin is like 75mg and available to by at boots or any pharmacy (it's good for your heart too it would appear)

Also there is a purer form of CQ10 online (there two forms one is more easily absorbed) but I found it hard to track down. It's also pricey stuff at the dose I was taking but my opinion worth it.

Ask as many questions as you need. One thing I would ask from your consultant is progesterone- I took it in early stages of pregnancy and from 28 weeks (so I didn't go into labour ect) - once it's on your notes your gp should prescribe it.

@hourbyhour101 thank you for this ♥️

I can only find the 400ug folic acid, which would mean taking around 12 a day to get to the 5mg - eek! I see you say you double dosed, so did you manage to find a stronger dose? X

@whippeywhippet I must have found them online or just taken loads of tablets (but I think I took two folic acid tablets) and it could have come from consultant/gp but it was a little while ago (way before lockdown) and it seems that there isn't the range of stuff there used to be.

If in doubt your consultant will be able to prescribe you a higher dose.

I felt like I was rattling tbh but it kinda helped with the doing what I can. If you have got 400gram ones stick to them and then up it if you need (you may not need it to be fair) but more throw mud at the wall and see what sticks (my consultants words - which seemed harsh at the time but he was right)

Honestly download that book and give it a read. Hopefully your seeing a decent consultant (the first one I saw just shrugged and went it happens) which btw isn't why my boy was born still. And he actually had the results of it in front of him.

Thankfully I got a second opinion from a decent consultant. Thank Christ !! I'm rooting for you.

Also I'm sure there was a thread on here were people were saying where they got all these supplements and might be more up to date than me (if that makes sense) xxx

I too have found this thread late, but it's been hugely comforting hearing other people's experiences. We sadly decided to end the pregnancy at 24 weeks following a bad congenital heart defect diagnosis. This was following two previous miscarriages earlier this year and so was extra painful.

We have had some time to recover and we have just started to ttc again, I'm just feeling so incredibly frustrated that I am back at the starting line again. It's all consuming (despite trying to not let it be).

I wanted to ask whether anyone has experience of falling pregnancy again after TFMR and dealing with the anxiety and stress? Thank you xxx

@georgie26493 So sorry to hear that you have also had to go through a TFMR. I am in the same boat as you. I joined this group that you might find helpful (if you aren't on it already.)

Anyone else TTC after TFMR? www.mumsnet.com/Talk/conception/4705967-anyone-else-ttc-after-tfmr

@georgie26493 So sorry to hear that you have also had to go through a TFMR. I am in the same boat as you. I joined this group that you might find helpful (if you aren't on it already.)

Anyone else TTC after TFMR? www.mumsnet.com/Talk/conception/4705967-anyone-else-ttc-after-tfmr

Hi Georgie, this is me totally! I'm 30 weeks pregnant following a TFMR and I am ENDLESSLY anxious. Haven't felt baby move in 10 mins? Panic! Phone call from the midwives that I wasn't expecting? DOUBLE PANIC!