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Recovery from TFMR

(40 Posts)
mooncalf Wed 18-Nov-15 12:19:32

Hi all - not sure if this is in the right section...

I am booked in for a tmfr on Friday (or maybe Monday if there is not enough space - find out today) after having a positive result for downs from an amnio last Thursday. I had the amnio after a 1:4 risk after the initial screening and then a high risk result from a harmony test.

I've been terrified, and sad and it's been so hard and heart-wrenching to even make this awful decision. But now we have... and I am mostly numb to it all. I am worried about the procedure - labour and delivery - but also the recovery afterwards.

Is there anyone who has gone through this, and can give me any advice? I suppose it is different depending on what stage of pregnancy you are at. I'm currently 16+2. I suppose at the moment I am just concentrating on what happens afterwards, so that I don't have to think too hard about what happens during.

If anyone would mind sharing their story, I have no idea really what to expect...

thanks x

offbeatgirl Wed 18-Nov-15 15:46:13

I'm so sorry that you're in this situation mooncalf. I had a TFMR for a different chromosomal condition when I was 15 +6 (first pregnancy). At this point you're probably looking at a medical as opposed to a surgical termination, as it tends to be seen as a better option to protect the cervix - has the hospital discussed this with you? Basically they induce you with drugs and you give birth. I wasn't very happy about this but in hindsight I think it gave me more of a sense of closure, and allowed me to see my daughter afterwards. My hospital had a separate area with individual rooms for couples going through this procedure, away from the labour wards. It took a while for the drugs to take effect, so I would take something light / distracting with you. The drugs made me queasy - I don't think they do this to everyone, but if it affects you, you might want to see if you can have an anti-emetic. I'd also take all drugs offered for pain relief for the contractions, e.g. diamorphine - actually passing the baby from my body didn't hurt as she was so small at this stage in the pregnancy. I went in in the morning and left in the evening.

Afterwards, the physical recovery was very straightforward, but the emotional side much harder: I felt bereaved for the daughter I had lost, even though I remained confident that I had made the best decision in awful circumstances. I was offered support from the hospital's clinical psychology department, and continued to meet with a member of staff for some months afterwards. I ended up taking six weeks of sick leave, which was longer than I had thought I would need beforehand.

A couple of things you might want to think about: do you want to see your baby afterwards? If you're unsure, you can ask the midwife to take a photograph which you can always ask to see at a later point.Your hospital may also offer some kind of funeral service - I hadn't considered this and was a bit taken aback when I went in and was expected to make decisions.

Take care flowers

mooncalf Wed 18-Nov-15 22:51:01

Thank you offbeatgirl for sharing your experience.

Yes it will be a medical management, and we discussed all the options for pain relief and what will happen during the procedure and immediately afterwards today at the fmu. The Dr there is absolutely lovely, and at no point seemed judgemental or anything.

It's such a hard thing. There's no decision that really feels right - it seemed a choice between two things that were impossible to choose between to me. But of course we have to, no one can choose for us, and we have to accept and live with it after, whichever we choose and whichever way out turns out.

The procedure itself doesn't worry me as much, as I believe out won't be as intense as a full labour at my stage of pg, and as you say, he is so tiny atm, that the birth itself will not be painful. It's the unknown that is scary, but I have had two medical managements at about 7 and 9 weeks, so I'm imagining somewhere been that and a full term birth.

But after... I guess its the emotional scars stay with you for longer. How long do you bleed for (everyone is different)? Did your milk come in? How long till you were physically up and about as 'normal'? I know it differs for everyone, and even for each time... I have just found out I have very little paid sick leave left, so am hoping it won't be 6 weeks of! In fact it can't be, we just can't afford it.

Anyway, sorry to go on... It really helps to get things out here!

Hopefullyhoping Thu 19-Nov-15 07:50:26

Our situation is a little different in that I gave birth to our stillborn daughter at 32 weeks after being induced but it sounds as though the procedure was quite similar. For us, they started giving me the induction drugs in the morning and our baby was born just after midnight. I asked and was prescribed 1 tablet which stopped my milk completely. I was up and about minutes after and physically felt fine. I bled for almost 2 weeks but no more than a period and getting less each day.
As I say, a very different situation but hopefully some practical answers for you

offbeatgirl Thu 19-Nov-15 09:46:50

Moon, at the stage you're at I don't think your milk will come in - this is what I was advised by the midwife. Physically, the recovery was fine. I spent the next day lazing on the sofa - and passed one rather large blood clot - but was more tired than anything else because I hadn't slept much for the past few days. The bleeding rapidly passed into basically a heavy period, which lasted a few weeks but got lighter as time progressed. If anything, I felt better physically than before because the morning sickness disappeared. So there shouldn't be any physical barriers to you returning to work quickly if you chose /need to do so. My workplace was a very stressful environment at the time I had my TFMR, with loads of colleagues off sick with stress. Perhaps if I'd worked in a different kind of environment I'd have felt able to return sooner.

KittyandTeal Thu 19-Nov-15 19:48:39

I had a tfmr at 22 weeks for T18. It was similar to the labour pains I had with dd1 so I had morphine. I didn't expect it to be as painful as it was.

Someone on here have me the advice to not be brave and take the drugs your offered, it was brilliant advice.

Physically the healing is fairly easy. I had antibiotics as well but if you're not past 21 weeks and having the additional part of the termination then I doubt they'd need to give you them.

The emotional side is very different. Everyone copes differently but I knew right away I'd find it hard so I started specialist counselling around 5 weeks later once I'd got over the shock. It was the best thing ever.

It will be 11 months tmrw since my dd2 died. I am having a new normal kind of life, I can laugh and have fun again which I didn't think I would ever do. My life is very different though and the way I see the world has fundamentally changed. I didn't expect that at all.

I see myself as having 2 lives now. One before dd2 and one now. On the outside they look pretty much the same. Inside I couldn't be more different strangely in a good way though, she has changed me for the better

AliBingo Thu 19-Nov-15 20:41:18

Quick reply as on phone. I was 16 weeks and had TFMR. It happened about 4 hours after they started the induction and I just had some codeine tablets, pain wasn't too bad at all. I was up and about as normal the next day and at work the day after (long story but kind of had to, job was sedentary). No milk, 2 weeks bleeding. Emotionally it was a different story of course. Sorry to hear your situation, hope all goes well, feel free to pm me if you have questions and I shoild have time to reply properly. Ali x

mooncalf Thu 19-Nov-15 22:31:49

Thank you all so much for sharing your experiences, it's so helpful to hear from real people who have been through it already. It's becoming more obvious that everyone is different and will have a different experience of it.

The Dr seemed to downplay it quite a lot, compared to some things I have read, but then I am going to be quite early compared to some of you, so maybe it is appropriate to my situation.

I am quite nervous about taking any medication (separate issue made worse by a recent allergic reaction to an anti emetic!) but I'm especially not wanting to feel too out of it. I had pethidine with the birth of my son, and I was quite simply wasted... For whatever reason it feels really important to be as present as possible, I just think it will help me to progress things. That said, I am not going to be a martyr either - like a term birth plan, it's pointless getting too fixed an idea, as I will probably feel different in the moment.

I have had the misoprostyl (sp?) twice before for mm of an early miscarriage, and my body reacted quite quickly, so I am hoping it starts quite quickly. And is over quickly.

I'm booked in on Monday as they don't really have room on Friday, so I have the weekend to get used to/brood over the whole thing, depending on how I am feeling...

KittyandTeal Fri 20-Nov-15 07:01:42

I also reacted quickly to the induction medication. I was quite grateful, I think my body was ready tbh, I'd been having strong braxton hicks for a week or so and the docs were amazed dd2 had lived as long as she had with my hormone levels.

I totally understand you wanting to be present. I was the same and surprisingly morphine was better for me that pethadine (I also has that with dd1 and was wacked out!)

Be kind to yourself this weekend, do whatever you need to to get through even if it's a weekend of raging and tears or one of watching tonnes of mindless tv. flowers

Hopefullyhoping Fri 20-Nov-15 09:43:46

I'd never given birth before and had no idea what to expect. My priority was to be as alert as possible during and after birth with pain relief as a secondary consideration. I had gas and air and morphine which I could administer myself. I didn't find the pain too bad at all apart from right at the end and I didn't feel woozy or drowsy at all. I avoided pethidine because I'd been told it might make me dozy and forgetful

mooncalf Fri 20-Nov-15 12:52:34

A weekend of raging and tears actually sounds about right today kitty - I have been quite together with it all, but today I find I am a wreck really. I am physically exhausted today and that doesn't help with the emotional stuff I guess - or maybe the emotional stress is making me exhausted? I don't know.

I am glad to hear it is not just me who doesn't want to just dose up on whatever will numb me the most - that really helps me, and yes hoping and kitty my primary concern is to be aware of it all, and not be forgetful afterwards. Painful though it is, I don't want it to all seem totally unreal afterwards.

And to hear it could be over quite quickly Ali we are at similar stages, so hopefully it will not drag out too long. You never know I guess, I was induced with my son and that took ages. A different process I am told, however.

Tomorrow I go in for the initial dose of whatever it is that gets my body prepared, and although things don't start for real until Monday, this is the point of no return. And I am doubting our decision simply because I won't be able to change it after tomorrow morning.

Which is crazy because I know it is the right decision for us. For so many reasons. But I am feeling guilty too because there are no other problems so far indicated and it seems that I am in the minority, because most people seem to be saying that there are other complications and that is why they are not going ahead. Even though I know that 90+% of people choose not to continue, and some of those must be like me.

I am not doing well explaining this! My head is all over... maybe keyboards should have an auto shut down function when stop making sense?

Anyway, it sucks, and it sucks for all you ladies too, who have had to go through this or similar, and for all those who sadly have it yet to come. I am so grateful to have this place to share and read other people's stories, even while it makes me sad that anyone has to do this.

I wonder if this thread is starting to get off the original topic - I couldn't see any recent ones that are generally about tfmr - is there one? Can anyone point me in the right direction for resources?

Hopefullyhoping Fri 20-Nov-15 17:23:27

Try and breathe if you can, I guess doubts are inevitable but you seem sure about your decision. For us, nothing at all happened with the first 2 lots of whatever they gave me and I was building myself up for a night of nothing but things moved quickly after the third dose. Everyone's different of course but the midwives did say that often it's slow starting and fast moving once it starts. Hopefully it won't be too much waiting about for you. Have you thought about getting any emotional support for yourself? Although I didn't contact ARC in the end, I believe they are very helpful.

KittyandTeal Fri 20-Nov-15 18:51:21

Yeah, it fucking sucks!

At 22 weeks (dd2 was measuring 19 by then) I was starting mild contractions to giving birth in 4 hours. I was only in pain for the last 2 hours really

Hillwalker1 Fri 20-Nov-15 19:44:47

Hi Moon
It's just so sad. I went through this just over a month ago and I feel for you. I was 18 weeks so a similar time. The actual day was no where near as bad as I thought it was going to be. The mid wives were so kind and really helped me. It also took about four hours and I took pain relief. It didn't make it seem unreal (I understand what you mean about that I think) but it really helped to control my emotions. I listened to the radio quite a lot and focused on that. I went back to work after a week but should probably have waited a few more days if I'm honest. I'm a teacher so it meant talking a lot which I wasn't really up for. My milk didn't come in and I was up and about after a few days but felt tired and muddled. Even though it was awful, I don't doubt that we made the right decision. I just feel sad that it happened. So many people say it but it is true that you have to give in to your feelings and be kind to yourself. It's shit but know that lots of other people have been through this so there is always someone to talk to. X

mooncalf Sat 21-Nov-15 12:54:05

Hi all - well I've been in to have the first dose of whatever it is that 'gets you ready', which was quite an emotional experience, but I feel better for having taken that next step.

It's really helping to hear all your stories, much as it is sad that you have them to tell. It's helping me to get used to the idea of what's going to happen, and what to expect. It sounds like its unpredictable when it could start, but fairly quick once its started, which is a relief too. I was induced with my son, and started having contractions every 5 minutes or less within 30 mins of being induced, then it was 14 hours of that until he finally deigned to make an appearance!

Anyway. Yes it is shit!! I did speak to arc, and they were brilliant, but I haven't managed to phone back yet - I will ask about counselling after. Were any of you offered counselling, or is it something you are expected to sort out for yourself?

I can't imagine how hard it must be to go back to work as something like a teacher, where you have to be so together, and are so in front of others. I don't ready have to interact much with others at work, so that's a blessing!

I think what you've ask been saying its right, you can only go with your heart, and then try to be gentle with yourself, and try to remember what you're doing is done for love, really.


Hopefullyhoping Sat 21-Nov-15 13:26:57

I was given various details of where I could access counselling but it's been left to us to arrange if we want to. Having said that, we are still getting occasional contact from a bereavement midwife who I think would probably sort it for us if we asked

KittyandTeal Sat 21-Nov-15 16:23:13

I asked for counselling but the only stuff the doc could give me was a student with no experience in bereavement. Instead I paid privately to see a specialist that my friend had seen. She made such a huge difference.

Teaching isn't so bad (although going back was hard as it was so full on) the hardest but was going back to find 2 of my colleagues pregnant. Watching them grow and go on maternity was hard

Hillwalker1 Sat 21-Nov-15 20:34:56

I was offered councilling from the labour ward who had their own councillor. I thought I was going to go there but haven't. I might need to seek it at a later date. You're completely right: it is for love. Take care x

mineofuselessinformation Sat 21-Nov-15 20:44:23

OP, your last paragraph in your last post says it all.
My heart goes out to you.
Be kind to yourself and look after yourself too. Take the time you need.thanks

mooncalf Sun 22-Nov-15 09:19:39

kitty I sympathise! The lady I manage went off on maternity a couple of months ago, and the other day she texted me to ask when was a good time to come in with the baby... We get on really well, and she knows I am pregnant, so I briefly said what was going on and that I wouldn't be in for a bit - no reply at all from that sad

On the most part people have been very very supportive though. Work have been great, and DH's parents have been great - this would have been their first grandchild - my parent both dead, but other family mostly good.

And then there's mumsnet of course, which is bloody invaluable. I just don't know how I would have coped with all this without this place to come to.

But if counselling is offered, I'll take it and see if it helps. I kind of find this too hard to talk about in person, without either dissolving into a snotty mess, or being a bit of a robot!

Hopefullyhoping Sun 22-Nov-15 10:15:45

We have found that some people are amazing and some people don't know what to say so say nothing. And it's not necessarily those that you expect to be in each category. I work with a lady who is due 4 days after my due date which was hard and I'm kind of not sorry that I'm off work while she is finishing and going on maternity leave. I can’t help but think that every time I hear what her child is doing, I'll think about what ours should have been doing but I try not to go there.

KittyandTeal Sun 22-Nov-15 11:07:31

Oddly my fiend who was due a week before me was awesome and a real comfort. The 2 that were pregnant later were strange, one asked me to tell her that everything would be fine for her 20 weeks scan! Weird.

They've both come in recently to parade the babies around. I work part time but they both chose days that I was in as they thought I might like to meet their babies hmm

Saying that most of my friends have been amazing. I've not had too many of the 'everything happens for a reason' type comments, just lots of 'it's shit' 'I'm sorry' and my friends best one which is just 'I love you'

mooncalf Mon 23-Nov-15 07:44:42

Oh its so hard isn't it? sad people do react very oddly. I was pregnant at the same time as my best friend a couple of years ago, though she was 7 months ahead of me. Then I miscarried. And when she heard the news, she texts me pictures of her new baby - and a message 'little one sends love' or something. She did the same this time when she heard our diagnosis. Really odd. She's otherwise a very sensitive and thoughtful person, and I just can't find a way to explain just don't do that, without making her feel bad. I know she wasn't showing off or rubbing my nose in it, but my heart reacted that way anyway.

kitty sounds like you work with people with the same odd thinking - I just can't fathom doing that! It's so strange!! Glad you have some good support though, and I agree that friends who know when to say exactly the right thing are very precious.

Well even the ones who say exactly the wring thing are really, I remind myself that they are clumsy rather than evil.

hopefully, you probably will find it hard at first, when you see your colleague again, but I think we just get used to stuff if we allow ourselves to face them and feel our feelings. Even when its painful, actually especially then!

Anyway. Today is the day. I had better drag my bum out of bed since we are suppose to be seeing off in about 15 minutes. Glad that by the end of the day it will (please, please) all be over. But what a day it will be. I'm so anxious now, and surely that won't help! Wish me luck...


Hopefullyhoping Mon 23-Nov-15 07:57:57

Thinking of you and wishing you all the luck in the world today. Hope that it's smooth and peaceful and not too drawn out and remember we are here for you after. You can do it.

KittyandTeal Mon 23-Nov-15 08:00:17

Thinking of you today. You will get through it and the physical part will be over soon.

Be kind to yourself and let the midwives look after you. flowers

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