TMFR - 13 weeks and no hope

[CasperFlamingo]

So I guess this is it. This is me finally acknowledging that what is happening to me is really happening. And that makes the numbness I've been feeling this week just intensify.

On Tuesday, at what should have been my 12 week scan, a happy, joyful time of telling people our wonderful news, instead I was handed the impossible news that my baby - a wriggling bundle with a happy little heart - was actually not going to make it to term. The sonographer told me immediately that my baby's nuchal translucency was 10.8mm - some of the highest she had ever seen. She also showed me on screen the fluid build up in its heart, abdomen and all around its body. She referred me straight away to fetal medicine, who could slot me in on Thursday. In fact, so severe is the case of cystic hygroma and hydrops fetalis, the sonographer told me she would be surprised if the baby's heart continued beating to make it to that appointment two days later.

My husband wasn't with me at the scan. We had agreed that, due to my last pregnancy with our daughter (also fraught with medical issues from week 30 onwards), and all the scans I needed, he would "save" his work allowance for thr 20 week and later scans if needed. So you can imagine the phone call I had to make as I walked out of the hospital. Telling your husband you're carrying a child that is likely to die is one of the most appalling things I have ever had to do.

But it isn't the last. Following our consultant appointment on Thursday, where the doctor kindly but firmly confirmed the prognosis, we knew we couldn't do anything but termination. How could we continue knowing there was no hope, and things are just going to get worse and worse for our little person? I can't bear the thought of it.

So next week we are going to have a medical termination (TFMR). I have scoured the internet looking for accurate stories of what that will be like. I know it will involve labour. I know it will involve pain. I know I will have to make decisions about seeing the baby, or making memories, but none of that feels normal or palatable, and so now I am just numb. I'm dreading it ever second we get closer to it. I don't want to do it. I'm afraid I might cry all the way through and never stop.

I'm so lucky to already have a 2 and a half yr old following a miscarriage in our first pregnancy. But I look at her and can't help feel more sadness. People tell me to take comfort in her - that I'm lucky to have her. And I just can't. It doesn't feel lucky to be going through this. It feels like the worst f-ing luck of all. I'm getting irritable, losing my patience, making inappropriate jokes - I do not know how to cope with this. I don't know how I'll be able to look anyone in the face after this.

Anyway. There it is. The ugly truth.

Hugs xx

I’ve been exactly where you are, nearly two years ago.

On a practical level I had a surgical termination and found that easier to come to terms with.

On an emotional level, it is hard, it’s so hard. It does get easier. You will come through this.

Sending love.

It’s absolutely shit. I’m six years post a surgical TFMR and I can tell you that I’m fine now. Yes if o take myself back to that place I can tear up, but emotionally I’m okay and given enough time you will be too ♥️

lots of love to your family and be very gentle with yourself.

So sorry to hear that. You can have surgical management, it doesn’t have to involve labour if you don’t want it to.

Oh love. I'm so sorry

I’m so sorry you’re going through this . I’ve been where you are two years ago and after two previous miscarriages. It’s brutal and it’s not fair. Our diagnosis took much longer and we ended the pregnancy at 20 weeks. I wish with all my heart I’d held him but I just couldn’t cope with it at the time.

Do what is best for you and your family now in this moment and take care of yourself. It doesn’t feel like it but you will handle it and you will be ok. If you have any questions about how it all goes on the day please feel free to ask.

Sending love

I'm so sorry. I could have written your post. I was in an almost identical position with my first pregnancy and ended up having a TMFR at almost 16 weeks by the time all the additional tests were done. I have no idea how to private message on here but if you know, feel free to ask me anything.

I was too late for a surgical TMFR at the hospital so my only option was to give birth. There are so many things I wish I'd known. I was terrified of seeing the baby. But there was nothing to be afraid of. And I got to spend time with my baby boy afterwards. They even did foot prints for me at the hospital.

Take photos. Lots of photos as everything will be a blur.

I asked to see him again after he'd been in the fridge for several hours. My partner at the time told me not to. I'm so glad I did. He looked so different and I got a photo which I treasure. The fluid in his body had kind of settled over night and he just looked like a tiny baby. When he was first born the fluid build up was more obvious but still not scary to look at, but confirmed he wasn't ok and this was still the right decision to have made.

The hospital were so supportive. I had no idea of the care I would receive following the delivery. The baby was treated with respect and brought to me all cleaned up and dressed in a tiny outfit (knitted by volunteers) and in a tiny crib.

My baby also had a funeral. Organised with the support of the hospital, and free. You don't pay for a child's funeral. Only my partner and I attended but it was our way of being able to process and say goodbye. I never ever imagined a TMFR pregnancy would get a funeral.

Your world will stop and it's almost inconceivable that everywhere around you life will go on. You might not have told anyone either which makes it harder.

I'm 4.5 years on and it's still hard. But it does get easier. But it took quite a while to get there.

One lovely thing I've heard someone say is to give baby the name you intended or love. Don't 'save' it in case you have another baby. This is also your baby and you will use that name to remember them by.

And yes as I PP said. Be kind to yourself. x

Hello my dear. I am so sorry this is happening to you and you describe it much like how it went for me too. We’d had a private scan at 9 weeks, and baby was a bit awkward to see so they invited us back for free at 11 weeks and my husband was away with work so my mum came. She was so happy, her first grandchild.

The following week hubby and I went for our NHS 12 week scan and got the awful news the NT was 8-8.5mm, with appearance of a cystic hygroma. A NIPT suggested high risk for Edwards Syndrome (T18). We didn’t even have a CVS, we knew there was no hope, baby was very poorly regardless.

I went through the termination at 14 weeks so if there’s anything I can help with, just ask.

If you go to the antenatal tests board, there are a lot more threads on tfmr. I’m also on the Babycentre TFMR board.

i can really recommend the ARC charity, they have a private forum for those that have had tfmr and it’s a very safe space where everyone has had one x

Regarding the actual delivery, I really didn’t know what to expect. The first pessaries didn’t do anything I could feel, I was listening to very relaxing spa type music and feeling very calm and quiet in the delivery suite. Within an hour of the second round of tablets, I got a temperature. That was actually worse than any pain.

For me, I found it tricky to not know how long it might last or how much progress I was making. The midwife got me a heat pad and was just starting to talk about getting me some serious pain relief when I delivered. She reassured me I could have all the pain relief I wanted, as I didn’t have to worry about the impact on a baby (meant in the nicest way). I didn’t really want to be groggy and zoned out though so resisted and then it was over. I felt what can only be described as a sort of ‘bubble’ and that must have been the baby slipping down but I didn’t realise . On the next contraction, the baby slipped out.

Consider if you’d like to see baby. I asked the midwife to look first and let me know if she thought it was wise or if baby was too deformed and it would upset me. My husband wasn’t sure he wanted to look but I did and I’m glad I did. I was quite detached by that stage, it was just a way of coping I think.

I then had the injection to deliver the placenta and it happened ok, with a few coughs to help it out.

My temperature came back down and the sickness and upset tummy stopped fairly soon after delivery too.

I went into hospital at 9am, had the first pessaries at 1pm (there was a delay as there was an emergency elsewhere). Next round of tablets at 4, baby delivered at 7pm.

I stayed another 24 hours in hospital as they put me on IV antibiotics as a precaution because of my temp.

I was so glad I had several nightshirts to deliver in, plenty of big pants, slippers, a cosy cardi to wear instead of a dressing gown, and some nice loose comfy jogging bottoms and a fresh T-shirt to wear the next day. Make sure you take some maternity pads too. Baby wipes were also really helpful.

if I think of anything else I’ll let you know x

I read a lot of sad and occasionally Hapoy stories on here. The camerardarie in all things has helped me to mentally recover from my MMC last year.

That said, I cried when I read your post. I feel so sad for you. No words describe the pain you must feel. I remember being told at my 12 week scan that what I thought was a normal pregnancy wasnt and that i had, in fact, been carrying a dead embryo for six weeks with no idea it was the case and although i have recovered physically and mentally i still have days when i cant believe the horror of it and i feel like it must have been a horrific dream.

Know that everyone on here is holding your hand and hugging you tight and that you are absolutely not alone in your pain xx

First of all, please can I say a HUGE thank you to you who have responded to this. I'm ever so grateful for your time and your experiences - it's been a huge help, thank you.

Today I went in to see the consultant again. He had arranged to come in on his day off to meet me, knowing that the quicker we can resolve things, the easier it will be for us all. He was EXCELLENT. Kind, calm, factual but sensitive. I can't thank him enough. He went through everything in detail - all options, pros and cons, what the experience is likely to feel like, potential complications, what happens afterwards, aftercare... He took his time and spent over an hour and a half with me in total. He scanned me again to check the baby's heartbeat - he had said in our previous consultation that babies with issues like ours don't tend to last very long, so I think he had been hoping, for all our sakes, that baby might have naturally passed over the weekend. Sadly (or not?! I don't know how to feel!) the heartbeat was still there. Baby is still a wriggly bundle. Utterly heartbreaking.

My situation is complicated by a previous C-section with my daughter - my medical termination is going to involve induction, so they can't use as much of the medication on me as they would someone who hasn't had a C-section, as it could cause problems with my scar. So it might be a longer process than normal, because the doses are only 1/8th what they would be typically. The bereavement midwife who has been assigned to us said that this could make things take a lot longer than they would usually, which can be emotionally distressing for everyone involved, including the staff. She told me to be prepared to be in for 18 hours as a "typical" amount of time for inductions like mine. She was also kind, and showed me the suite where we will deliver - it's away from the main ward, set up like a mini-hotel with its own kitchen, en suite, and soundproofing. It's all very "fine". Like, I can't be positive about somewhere I don't want to be, doing something I don't want to do. I don't even know what to say about it.

After this, I was taken back to a private room and then given the medication to stop the pregnancy hormones which will effectively stop life support for my baby. I couldn't stop to think about what the pill did. I knew I had to take it. I knew it was the best thing for my baby. But still. Once I was out of the hospital and back in my car, I cried my eyes out for about twenty minutes solid. And then had a fight with the ticket machine in the car park - I imagine those people watching me thought I was out of my mind.

I'm back home now, thinking about practical things like who's going to look after my daughter, what I need to take with me to the hospital, how my partner is going to cope with what's going to happen on the day... It's the waiting that's driving me mad. I guess there's not long to go now though.

@CasperFlamingo im so sorry. Sending you the biggest handhold x

Hello, thanks for the update.

I remember taking that pill, I had a wee moment where I just looked at it and crumpled, it was my only real moment of crying in front of the hospital staff. They offered me some more time but I knew I had to do it.

I also really know what you mean about hoping baby would pass naturally. T18 babies rarely make it to term, and I kind of hoped when we went back 48 hours later from the 12 week scan, that baby had just gone naturally and I wouldn't have to make the decision. I even remember asking 'is it even still alive?'.

Oh I have to reach out to you. I am thinking that you feel like you are in a bubble at tge moment and life is going on around you as normal while there you are in your world of pain.
The bubble will burst, probably when you least expect it and you will feel more normal again. It will take time. It is different for everyone and you need to give yourself time to grieve. When those feelings of pain and loss come give in to them and let yourself grieve properly.
You are doing this for absolutely the right reasons so try to think on that. You have been forced to make a decision nobody should have to make. You are a brave and lovely person and life is just rubbish sometimes xx

Anyone had any experience of the first tablet making them feel poorly? I was ok yesterday, but have woken this morning feeling sick, dizzy and just "heavy". Makes me dread tomorrow even more 😭

Hi, I am so sorry for what is happening to you and for what you are going through!
I was in a similar situation. Same outcome for baby/pregnancy, different diagnosis.
I don't remember the first tablet making me feel ill.
But also think you are probably not eating/ drinking enough and obviously mentally feeling awful!
Look after yourself and be kind to yourself.
I found the process very hard and it took a long time too ( can't quite remember timescale) more than 12, less than 24 hours.
We had to have a medical termination to have a post mortem afterwards to confirm the diagnosis and check whether it was hereditary too. So I didn't hav3 much choice in that regard.
My advise would be to make sure and ask for pain relief! Lots of it if you need it! It is like labour ( not as bad but mentally more traumatic as I remember very much how I didn't want to let go of baby)
Also,if you work, take enough time off work to heal. I went back after a week and in hindsight it was too early and I should have taken more time.
I wish you lots of strength for the next few weeks!

So sorry op. I had a tfmr in May at 21 weeks. I was induced, delivered and held my baby boy. I went in at 9am I think I had the pescerys about 10am then delivered around 4.30pm I think. I didn’t realise it was working as it was just like a dull period pain, not like contractions I had with my living child. Towards the end it ramped up and there was like a woosh feeling like something flying out of me and it was my waters then in the next contraction the baby so not like “pushing” like a normal birth. That freaked me out a bit I wasn’t expecting that.
I wish I brought some books to read him a story.
my baby had severe cardiac defects. Unfortunately it was what people call a “grey diagnosis” I.E. he wouldn’t definitely die on the outside but would need 3 surgeries between birth and 5 and 60% chance of not surviving to age 5 and all the possible other difficulties that could come with that. I used to hope they would find something unsurvivable wrong with him or that on my next scan his heart would have stopped beating so that it wasn’t my “choice”. I am wracked with guilt every day. But hopefully when this awful experience is over you can remember that you had no choice. Your baby would not have made it. This Christmas if I ever caught myself thinking “I should have had a 3 month old” I stopped myself and reminded myself that I would have never had this Christmas at home with my 3 month old and 18 month old. My reality would have been my 3 month old in a hospital 400 miles away and severely poorly and having to choose between my 3 month old and 18 month old. That would have been the reality and I found it helpful to remind myself of that.
you will never be the same again, but you will be happy again. Promise.

Hi again.

It's all over. I am now lying in the bed in the maternity bereavement suite at our hospital, thinking about everything that has happened today.

I'm going to outline it here, in case it helps anyone about to undertake this procedure. I think it's so important, because I struggled to find clear stories. I hope it helps someone.

We arrived at hospital at 8.30am and were met by our dedicated midwife - we are lucky (lucky?!) enough to have a dedicated bereavement suite and dedicated midwives at our local hospital. Ours was excellent all the way through. She showed us into the suite - which looked more like an Air BnB than a hospital room - painted lovely colours, soft furnishings, it's own kitchen and en suite. It really is lovely, given what it's for.

Our midwife explained everything that would happen. She asked constantly if she was going too fast, or we needed to take a break - she was so kind and reassuring. She even gave me some anti-sickness drugs because the first tablet from Monday made me feel so sick.

I had the first dose of the TFMR medication at 10.20am. This was inserted by hand using lubricant and gloves. She took my bloods, obs, and left us alone for a bit. Because I've had a previous C section, they're only allowed to give you the "crumb regime" of medicine to avoid rupturing the scar, so it felt like it wasn't doing much. And they could only give me the meds every 4 hours instead of 3, so it was pretty boring at first. We had brought some travel games and messed about on our phones. There was also a TV in the room for us to watch.

The hospital provided us with all our meals, including loads of snacks and drinks they put into the kitchen for us. Husband also popped to the WHSmith for top ups. It all felt very civilised.

I started with achy cramps, like bad period pain, about 45 mins before the midwife came with the second tablet. It was pretty manageable at that stage. She said my cervix was still closed and tube-like, meaning no movement. I hadn't had any real spotting either. This was about 2.30pmish. The achy cramps continued - it felt like someone was rolling a rolling pin from my ribcage to my pelvis. It wasn't awful, but I could definitely feel it building.

At this point she asked if wanted to discuss what happens after birth. She checked with us all the way what we wanted, what we were comfortable with, whether we wanted her to stop. She really was fab. We decided that we did want the testing done to see if there was a reason our baby had developed such horrible conditions. We also decided we wanted our baby blessed, and we agreed on a shared cremation with other babies - we like the idea of them all being together and playing together somewhere forever.

By about 4ish I was starting to get restless and the pain was more substantial. It would come and go in regular waves, building and then dropping. I thought it was still manageable, if uncomfortable and mildly painful. I found stretching and wriggling whilst it was happening really helpful to relieve at least some of the pain.

When the midwife came back at 6.30pmish for my third dose, I was in significant pain. Each bout felt worse than the last. The midwife later said I hid this really well, because all she offered me was a paracetamol at that stage - she didn't think I was suffering as much as I felt. After administering the third dose of medicine, which was probably the most painful, she left the room to get the paracetamol. About 10 mins later, after the most intense cramping drew me to tears, I actually gave birth on the bed. My husband rang the buzzer and she came back, in total shock that I had just had the baby - she had told me my cervix still wasn't open that much so she had expected it to be a while longer.

Our baby was born still in the sac, which is apparently quite unusual, so the midwife offered for us to see. I'm glad we did, because it was really incredible. She then popped the sac and showed us the baby inside. A small, perfectly formed tiny human. I'm glad I had the courage to look. She wrapped the baby up and was so kind and gentle.

Then it was time for injections to help pass the placenta. This took an act of gravity over the toilet, which wasn't graceful, but meant that I didn't need a canula or more drugs to help it along, which was ideal.

We have been given a memory box, which we can take home, with photos, trinkets, seeds, a teddy bear, etc. There's also a lovely book in our suite that other families have written in to show love and support for others using it, which I intend to write in tomorrow.

For now, I'm just lying here, listening to my husband's sleeping breaths beside me, trying to fathom how I move on from today. I know the "hard" physical part is now over. It's the healing that needs to come next. I'm just not sure how that begins. Yet.

I am so incredibly sorry @CasperFlamingo
I know nothing I can say will help, so sending you the biggest hug x

Good morning Flamingo

I hope you managed to get some sleep last night. I am thinking of you. You describe it so well, it's oh so familiar. Glad it happened fairly smoothly.

If you need somewhere to talk openly and safely about it, request to join the ARC charity forum for those who have had a TFMR, it has a lot of lovely ladies in the same boat.

I hope your recovery is ok. I had quite a bit of discomfort, like bloating, on day 4, and eventually that night, I passed a big piece of what I think was placenta, the length of the palm of my hand. I put it in some cling film in a tupperware in the fridge and phoned triage the next morning but they weren't concerned. It happened again a few days later and then that was it over.

For the first week, I found the tears would pour out of me, but I went back to work after 10 days and the distraction helped. I think about it all the time but I am ok, I'm happy again and the heartbreak has gone.

I was desperate for my period to return, I became very focussed on TTC again. It arrived exactly 5 days after my TFMR and my cycles have been normal since, just heavier.

Bless you, sending hugs xx

Hi op

I was in your position 8 years ago . Yes the tablets made me terribly sick. Maybe all the shock and trauma too .

I went in 2 days later to be induced.

They told me I didn't have a choice between medical management or surgical. I now know that's not the case .

I was on a day ward and was in around 12 hours. I had pethadine, and had a very sick labour . I found the staff hard and unsympathetic- I didn't realise I'd need to use a commode and the pessaries do cause loose bowels . I found it undignified.

When I delivered my little girl id gone to the actual toilet and they shouted at me , although I when I realised what was happening I got off the loo -

I decided to see my little girl , and had a named and blessed.

It was all very clinical and upsetting.
She looked like a baby bird who had fallen out of the nest . She was it looked to me , smiling. Her skin was very delicate and transparent and I was scared to touch her - so I held her crib .

I was given the memory box and went home .

In hindsight I think surgical would have been my preferred option but at least medical management meant I could say goodbye .

I wish you love and lick and strength for the coming delivery. X

Sorry I hadn't seen your update - sending you love and hugs - x

Sending you love and hugs. Wishing you all the very best for your recovery. Be kind to yourself. 💐

Two days home and it doesn't feel real. I hate that it's over, because what is there left now? A heavy period, a flabby belly, and sore boobs and nothing... Nothing to show for it. No evidence that my baby was ever there to the outsider. I feel so utterly pointless and empty.

My emotions are all over the place - anger is never far away, I'm easily irritated and snappy, and basically never know when I'll burst into tears or not. Things that set me off are totally random - tonight it was reading a story to my 2 yr old. It wasn't about anything particularly upsetting, but this huge wave of emotion just took my breath away.

The messages from friends have died down - a few have used the expected platitudes - "at least you have a daughter", "there's always something to look forward to", "things happen for a reason", "it's for the best". I could scream at them. I have given short replies. I feel rude and mean, but also don't care.

I also don't want to see anyone I know. I want to escape, but I have a husband and child who I can't just abandon. But the urge to disappear is so strong. I have considered just taking myself away, but where can I go? It won't matter where I am. I'll still be followed by the feeling that I am useless, a failure, pointless.

The Drs at hospital gave me a sick note for four weeks. At the time I thought that was a ridiculous amount of time, but now I feel like it will never be enough. I have never had such a deep lack of motivation for anything in my life - it's so alien to me. I don't even know how to just "be" anymore.