TFMR - process and recovery

[Mw456]

Long time reader, first time poster... Looking for experiences from others who have sadly been in this situation. We will be ending this pregnancy soon as little bean has Edwards syndrome. I know and respect that this wouldn't be everyone's decision but it is right for our family. Apparently a bereavement midwife will call us Monday. It sounds like medical management is what the hospital will recommend. I know I can have surgical via BPAS (I am 15w) so I will ask for information about that but I think I'm ok with medical. I have given birth via induction before and I also react badly to anaesthetic.
I am feeling quite poorly still with morning sickness or maybe reflux as I'm sick most evenings and eating very little. Psychologically the sickness is hard to deal with now! I also have a bad cold and am running a mild fever now and then (I'm contacting my GP tomorrow). Has anyone gone ahead with a termination feeling unwell? I guess they can give me whatever drugs they feel are needed to help... Is there anything I should be asking the midwife tomorrow, about this or anything else?
I also wondered how long people take off work for medical management of baby loss in the second trimester? I think I'll want to go back sooner rather than later as I'd rather be distracted but I don't want to be unrealistic.
Thank you and my heart goes out to anyone who has had to make this most awful of choices.

Hi Mw456,

I am so sorry you're going through this too. This is my first time of posting too.

We found out yesterday (after a very long weekend of waiting) that our little bubba has Edwards syndrome too. I'm 13weeks and 2 days. I am also still poorly with nausea and sometimes vomiting. It really is a heartbreaking situation and the sickness is hard to bear now, I completely understand how you are feeling.

I am having the medical termination too. We took the first set of medication yesterday and are due back in hospital tomorrow at 10 for the final procedure and to say goodbye.

I have no idea how much time to take off, sorry I feel like I'm not helping answer any questions you have. I think I'll need next week but then it's half term so I'm off then too. I'm just going to see how I go. I suspect some people need to go back straight away and others need much longer. Everyone is so different.

I keep bursting into tears at random times and I'm letting it all flow. Thankfully my husband is incredible and we are falling apart together and trying to hold eachother up when needed too.

Lots of love to anyone who has been or is going through this xxx

@bobbins5 I am so sorry to find you here too and for what you're going through. Thanks for your reply. To be honest I'm not sure I was really expecting answers - just needed to write it down somewhere! I am on the same sad timeline as you - took the first medication yesterday and we go in tomorrow. Just packed the worst overnight bag I've ever had to pack! My husband is also being great and is currently downloading stuff for us to watch tomorrow if there's a lot of waiting. We've packed some games too. Slightly worried that the midwives are going to think we're really weird... They've probably seen every coping mechanism going I guess right? I am kind of veering wildly between being really practical about things and just randomly crying. I think letting it out when needed seems healthy.

I went to the GP and turns out I have an ear infection so on antibiotics for that. Feeling a little better already so glad I got that sorted on top of everything else! The GP was lovely, which also made me well up.

I hope everything goes as well as it can for you over the next few days. Take good care of yourself - this is such a tough thing to go through xxx

@Mw456 Weirdly comforting having you on the same timeline. Although nothing helps really does it?

Yes, my husband is in charge of downloading programs too. Games are a good idea- absolutely, they will have seen every coping mechanism under the sun. I haven't been able to sort my bag yet, just dreading it. Like you say, very different from the others I've packed. Plus I'm so nauseous tonight and still got to do bedtime for my youngest.

I'm the same, any act of kindness and I completely crumble.

Hope everything goes as well as it can tomorrow. I'm dreading it but couldn't have chosen the other options (just not right for me) I'll be thinking of you, take care too xx

I thought I'd update this thread in case someone finds it later and wonders what happened. There are a lot of scary stories out there about the physical side but for me there have been thankfully no major complications so far.

I had a very straightforward medically managed TFMR at 16 weeks. We went in to hospital about 11 am. They'd suggested later that afternoon when I first called the labour ward as that would give the first tablet the full 48 hours to work but I called back and asked to come in earlier. I just couldn't face more waiting! The midwife who looked after us most of the time was absolutely lovely. I will never forget the kindness I experienced that day. We were in a special ensuite room next to delivery suite but separated enough that we couldn't hear other mums labouring. The midwives were very respectful and sensitive to our needs throughout.

The first set of pessaries did the trick. All over with in 4 or 5 hours with quite minimal pain - just like bad period pains at its worst. Pushing the baby out was not painful - nothing at all like my full term birth!

We did see baby. That was a bit of a shock if I'm honest and didn't give me much peace. But I also felt I would have regretted not seeing if that makes sense.

We went home the same night and, though I did end up back at maternity assessment 3 days later after passing a large clot (just as a precaution - I was fine), I have just had a couple of weeks of light bleeding.

Emotionally I was absolutely all over the place the first few days especially. The hormone crash, the night sweats, flashbacks, anxiety... It's less raw now. Talking to my bereavement midwife and opening up to my friends has helped.

I went back to work after just under two weeks. Possibly that was too soon, even though I could work from home. I struggled to concentrate. Sometimes I just feel very sad. But it's early days. I found journalling helpful the other day. Forcing myself out in the fresh air also helps. One day at a time... I joined the ARC forum, and that has helped too, especially to get "out" some of the uglier thoughts with people who understand.

My heart goes out to every mum experiencing baby loss of any kind x

@bobbins5 I hope you are doing ok 🌷

Thank you for sharing. I’m about to go through this and it helps.

So sorry for what you're going through @Buster882. Sending love and strength your way 🌷Reach out for support where you need it. I have found TFMR mamas on Facebook a very supportive community.

@Mw456 I've only just seen this. I am doing 'ok'. 13 weeks post tfmr and delivering our darling baby boy Finn (as we now know).

My experience mirrors yours so similarly. We took the first tablet (worst tablet I will ever take) then were back after 48 hours. We too had a special side room dedicated to such sad events, it had a garden which my husband found lots of comfort in. First pessary started thinhs off as expected. Bad period pains but I took a hot water bottle which I found helped. Delivering little boy was not at all painful, it just happened. Our midwife and bereavement midwife made the unbearable experience bearable, just. I slept and slept and slept. My body coping no doubt. We didn't want to see baby at first but overnight changed our minds. We sat with him, talked to him about his sister's and how much he was loved already. My only regret not taking our favourite family book to read to him. But I read it to him before his funeral instead.

I felt everything all the time. I was numb, lost, devastated, heartbroken all at once. The more normal I tried to 'do' (school run, dinners, food shop) the worse I felt. I had to sit and just be with my grief. I still do sometimes but I am getting there, I sob less than I did.

We are ttc but frustratingly I still haven't had a period! I feel.like something isn't quite right but the doctors keep telling me to wait. I'm 42 and it took us years to conceive last time (new partner) so we have been told not to hang around. I'm getting fed up!

Anyway I hope all ok with you @Mw456 and sending love to anyone reading this thread ❤

Hi I can sort of relate.

I had a 13 week loss in Jan (baby was 11 weeks) and she had full edwards syndrome found via post-mortem karotyping. She came totally naturally but had a d and c to remove the placenta as it didn't budge at all.

I also have a 14 week loss in June and he was also edwards syndrome found via cvs. We were set to TFMR but his heart stopped the day before the first pill. I had medical manegemt for him and it was definitely a form of labour. The placenta came out in parts and I was readmitted a few days later when I laboured the rest out. I would still do the medical management again if I had to as I don't want to risk ashermans with a second D&C, especially with a second trimester loss again.

We don't have anything that predisposes our babies with edwards. We had all our karotyping done on ourselves and all the tests for eggs/sperm etc.
But it is thought to be the most common chromosomal abnormality, and chromosomal abnormalities are the most common reason for miscarriage. So that's why it happened twice.

Hi Ladies

I was searching the boards for Edwards Syndrome as I've recently had a TFMR due to that. I was wondering if anyone is still around on here and could give an update on how they are now?

Hi @MrsScotland sorry to find you here too. I am doing ok, ups and downs, but certainly nothing like those really early weeks. I did end up with horrible anxiety in August, about 10 weeks after our TFMR, and reached out to my bereavement midwife for some support. I'm having some counselling and also CBT. I think they're both helping. But sometimes it still hits me bad. Our due date passed a few weeks back and after being fine on the day, I went into a huge decline for a few weeks. Really angry and distressed. We are TTC and nothing is happening so I think it was a cousin's pregnancy announcement that tipped me over the edge. It seems dealing with this grief is going to be a long process!
How are you doing? Please share your story if you'd like to.

Hi there lovely ladies. Sorry to find you here. I'm 6 months+ post TFMR for Edwards syndrome. I'm back at work but still need time off every now and then when things get too much. It was our little Finn's due date last week and that was extremely tough. My biggest trigger is my ex husband had a baby boy just a few days before our little Finn was due. He is a nasty piece of work so the unfairness of it all is just too much at times. We too are TTC but it's been a terrible ride. I didn't have a period for 6 months so ended up being diagnosed with early menopause (my heart broke all over again) but they have since said that may be incorrect. More tests next week.
My bereavement midwife has been my lifeline- i have been diagnosed with depression and anxiety since losing our boy- so am waiting for counselling too. The grief still knocks me sideways sometimes. We have a watercolour artwork of his scan, a teddy made with some of his babygros and his ashes box close to us in our family living room. It helps me to feel close to him and remember him. Much love to you all going through this xxxxxx

Oh @bobbins5 I am so sorry you've had such a rough ride. I have also been thrown a curve ball with my cycles, though not such a tough one. Took nearly 10 weeks to return so I was freaking out about that. Then normal (ish) for a few. And this latest one has been really weird. I convinced myself I was pregnant (on my due date!). But my period started, then I spotted for weeks afterwards. Then I convinced myself I was in perimenopause because I was having no sign of ovulation, I had hot flashes, insomnia etc. Now it's calming down (though still no period) so I'm hoping it's just a wonky one - low estrogen? Who knows why. So I have some insight into that panicked feeling that your time to conceive again has run out. It's really gut wrenching. I really hope your tests give you some clarity and some hope. Sending hugs xxx

Hi @MrsScotland so sorry to hear you are going through this as well, it is such an awful time! I had two Edward syndrome losses this year back to back (lost in Jan and Jun 23).

I am grateful I got pregnant again first cycle in August and am now 18 weeks pregnant. We had a very in-depth anomaly scan (took a whole hour) with our foetal medicine consultant at 16 weeks which showed a seemingly healthy girl. We have opted against CVS/amnio as our screening came back as 1 in 5000 (unlike 1 in 3 the other two times), no soft markers and NT was only 1.5mm. I still don't feel in the clear totally, but a lot more confident than I did before.

Definitely consider counselling as this helped me a lot in the early weeks after both my losses. Praying we all get our happy endings soon 💗🌈

Thanks to everyone who has replied to me.

Our story, well it had taken us 18 month to conceive, had various investigations but unexplained fertility. So we really were taken aback to get a positive result, and as the weeks progressed and I had a great first trimester, with 2 private scans at 9 and 11 weeks, we felt cautiously optimistic it was actually going to work out for us.

At our NHS 12 week scan, we found out the NT was 8mm. I think deep down we knew there and then that it was so high, there was no coming back from it. We had an awful two week wait for an appt with fetal medicine with the plan to do a CVS. In the meantime I had the NIPT and got the results the day before that appt, coming back high risk for Edwards Syndrome.

We didn't end up having the CVS, I knew it wouldn't change the outcome and I just couldn't be in limbo for another week.

I'm now two months on but we only just got our PM results this week to say baby definitely had T18, plus a large abdominal wall defect - various organs outside the stomach. We also found out she was a girl, I believe between 60-80% of Edwards babies are girls.

We're now TTC again and it was great to find out this week all the extra support we will be given. We had bloods taken to find out if there's any genetic reason.

@Effie96 I am so so sorry this has happened to you twice, I just cannot even imagine. I am delighted you are being cared for now and its going as well as it can x

@Mw456 and @bobbins5 I hope it happens again for us all. We have a new baby due into the family any day and I know Christmas will be tough, but I cling on to the thought 'just because someone else has a baby, it doesn't mean there is one less healthy baby in the world for me to have'.

I am taking a good prenatal vitamin with folate, plus 5mg folic acid, and I've even just started taking 600mg of ubiquinol for egg health. Next thing to focus on is trying to lose some weight but it's just so so tough. Since the TFMR, I turned 39 and I am feeling the immense pressure of running out of time.

@MrsScotland so sorry for the loss of your little girl. It's really tough. My sister is due a boy in early January (my lost one was a boy) so I'm feeling it in my soul right now. You're right though that there are plenty of bubs to go around! The pressure to get everything right when TTC - even when probably there's not much within our control - is also hard. I am glad you'll get good support in a subsequent pregnancy and I hope it happens for you soon! Do you mind if I ask what prenatal and ubiquinol you're taking? I hate this biological clock ticking so loud in my head!

@Effie96 I am so sorry you experienced this twice but so pleased your rainbow is on the way. Gives me hope too. Gentle congrats x

Hi there @Mw456

I'm so glad I tracked this post down, I read it on my phone and thought I'd reply at my PC so I can give you the links easier etc and then couldn't find it again!

This is the vitamin I'm taking, I liked that it had folate and vit D (D is also recommended by the NHS), as well as iron, choline, zinc, lots of other good stuff plus Omega 3. https://her9.co.uk/

Just on my first month of these, which are meant to be good for egg quality. I guess as it takes 3 months for eggs to mature, it will be that long before there is any impact. They also have more Omega in them too https://www.amazon.co.uk/dp/B0BD7SWDW5?ref=ppx_yo2ov_dt_b_product_details&th=1

I'm also taking 5mg of folic acid prescribed by the doctor due to my age and BMI over 30.

Only thing I've considered but I'm not doing yet is inositol. There's a lot of hocus pocus out there on the web but that seems to come up regularly alongside ubiquinol. This webpage gives a bit of an idea why they are helpful https://eastbayfertilityacupuncture.com/improve-egg-quality/

Let me know how you get on

Thanks so much @MrsScotland. Good luck to us all! Xx

Gosh, I am sorry to hear of your heartbreak, I hope that things have worked out for you. I am 43, never had a baby, but I have read lots about the possible problems with pregnancy, so want to be aware of what might happen.

hope things worked out for you. What a time you had.

did these supplements help? I am 43 and wondering about TTC or if it's too high risk

Hi there.

I have had two cycles since my tfmr and not pregnant yet so can’t give you a success story but I think it will take 3 months of taking them to get the full benefit. Also at this age it’s less likely on each cycle so not surprised it hasn’t happened for us yet.

I’m certainly going to continue with the supplements though, hoping they improve egg quality.

Yes, also as only 1/10 eggs are chromosomally normal at this age I imagine it could take a year. Fingers crossed for you. For me I am still at the decision stage with my partner and I want to be clear about the potential trials ahead and whether I can manage those. I recently I personally know someone who was 44 and had her first child although I don't know if it was ivf. I don't like the idea of IVF much because of how invasive it is. I guess the only other options are surrogacy or adoption but I was told for adoption there is way more couples than kids.