Post termination for medical reasons support thread?

[whyhastherumgone]

Hi all, sorry if this is the wrong place - just wondered if a thread existed already [had a look but can only find old ones] - if so can someone direct me to it?
If not, does anybody else want a support thread?
We're having to undergo genetic testing before we try again, so would be good to have a space to talk :)

[AliBingo]

I haven't seen any active ones recently so let's start a new one. I have had two TFMR, in March 2014 and in June this year. For chromosomal abnormalities. This last one, DH and I had tests and no genetic link was found so apparently we have just been unlucky. Am pregnant again, just waiting until I can get a NIFTY test to see if lightening has struck thrice or not. Had two miscarriages just before the last TFMR so am not feeling very optimistic tbh.

How about you, what's your story.

[whyhastherumgone]

Really sorry to hear that - hope you get the test and it shows all is well this time.

Had a MMC last year in December, then fell pregnant again this July. All went well - had Harmony at 12 weeks and nothing found - then at our 20 week scan a serious heart defect was found. We saw a cardio specialist who said basically it was very severe and extremely pronounced for that gestation, and that we would be referred to a genetic specialist. Genetic specialist said the symptoms could be pointing towards a syndrome - Noonan Syndrome - but she'd never seen it that pronounced that early before, so wasn't confident this would be the case. It could be that either myself or my husband carry a gene for it, or it could be something different, or just rotten luck. Had an amnio, bloods taken etc and made the decision to have a medical termination - was induced last Saturday.

Now waiting for results of our tests, amnio and post mortem to see whether anything conclusive crops up or if it was just bad luck. I'm hoping it was just a fluke, as I'm not sure what our next steps will be if DH or I carry a gene and the chances are 50-50 of it happening again :-/

How far along are you now? Keeping everything crossed for you x

[KTD27]

Oh I’ll join!
We had a TFMR in may for Edwards which was found on a NIPT and confirmed by CVS.
Am 6 weeks pregnant and absolutely full of anxiety that it’s goinf to happen again / I’ll have a mmc / something will happen so that this baby is another I don’t get to take home.

[whyhastherumgone]

@KTD27 hi, sorry to hear you've gone through this :(
Fingers, toes and eyes crossed that everything goes smoothly for you this time. I'm at the point at the moment where I swing between wanting to get pregnant as soon as possible and being terrified of it at the same time. I think we are going to wait until we get our test results at least, as if our chances are 50-50 i t happening again I'm not sure how I'll cope with that.

[Dmt80]

I'm so glad I came across this thread. I too am currently going through genetic testing for an extremely rare condition called Roberts Syndrome. I had a tfmr back in June at 17 weeks due to all four of my baby's limbs having abnormalities and I'm currently 10 +4 weeks pregnant.

I recall signing papers the day after i delivered my baby stating I was happy for genetic testing, however the genetics councillor told us only yesterday at our meeting that they have still to carry out the process as they wanted consent . This will take 3 months. Geneticist said it seems to be a genetic problem ( despite no actual testing being completed yet) therefore I have a 1 in 4 chance of my current baby having the same non compatible with life condition. I know for a fact all I am going to do is worry myself sick until I get the anomaly scan at 16 weeks and I don't think I can cope with another tfmr within months. In hindsight I feel she was rather blunt and matter of fact considering no tests proved anything, she wad only going with post mortem results but maybe that's just me clutching at straws that it was just a one off last time .

[Dolwar]

Roberts syndrome is inherited by getting a copy of the defective gene from both parents hence the 1 in 4. It is rarely sporadic so that's how they know without testing you.
Look at it this way.... you have a 75% chance of your baby being fine

[Dmt80]

I know, and I'm clinging onto that 75% chance of being all OK. I think part of my disbelief is due to the fact the consultant during the post mortem results at fetal medicine said her gut instinct was our baby had femur fibular ulna syndrome and not a genetic condition. So I've been told two very different outcomes. It's the waiting game that couples in these situations have to go through that make it so hard.

[whyhastherumgone]

I'm so sorry to hear this, it sounds like such a hard situation. I'm finding it hard enough to wait for the results and I'm not pregnant again, I cannot fathom how I'm going to cope next time if I'm lucky enough to get pregnant again.

It does sound like there has been a bit of a lack of communication with you - our hospital have been great but there was still a lot of confusion over postmortem as the geneticist really wanted it to be done at GOSH which isn't my local hispital's usual procedure so we ended up being asked about it over and over, including the morning after the procedure, which was pretty hard going when you don't really want to think about that kind of thing.

I really really really hope that it was just a one off and will keep everything crossed for you this time around. I would love it if you update us on how you get on as well? Even if you just want to come and air your worries/anxieties, I find sometimes it really helps x

[Dmt80]

That's really kind op, thank you, and same in your situation, please update us on the outcome. I can understand the loss you must be feeling at the moment along with thinking it could possibly be genetic. All i wanted to be after my tfmr in June was to get pregnant again (at that point the FM consultant said highly unlikely to be genetic so didn't see an issue in trying).

I don't think you ever not worry with subsequent pregnancies once you go through something like this. The naivety of thinking everything will go well seems to lose you as you are more aware of the things that can go wrong. I have came across Noonan syndrome when doing my own research on stuff, but given they said they are still unsure should give you some hope. There are lots of conditions out there that babies can be born with that do have symptoms that overlap so it's very hard to give a definite diagnosis. Yes they are experts in their field but until they have definite results pointing to a condition then try think positive - hard I know.

I asked the same question as you re if it was genetic and future pregnancies. Can't recall the proper name for the process but they take your eggs and partner's sperm and screen it for the defective gene, then if it's all OK it gets fertilised and implanted - similar to IVF. However the geneticist wasn't selling that option to me as she was saying it is a long process .

I'll keep this post updated with my outcome, I have my 12 week scan (12 weeks +6) in two weeks so maybe they can see the long bones to check for their absence/presence.

I hope you get your results soon and fingers crossed it's good news for you.

[weasledee]

Can I join too?
I have 2 healthy children and so very grateful for them...
But this year whilst trying for number 3 I had a miscarriage at 5 weeks and then a tfmr at 14 weeks for patau syndrome. Got pregnant again straight after and had a mmc at 6 weeks.....
After all that we are unsure if we should just call it a day as I don’t think I can go through all that again!
So sorry to read all your stories..... :(

[Dmt80]

Hi weasledee you have had a really tough time of it what with three losses . I do not blame you for thinking about not trying again, you can only take so much heartache. It's a hard decision to make too as you don't want to think about the what ifs either and regret trying again. Have doctors said you will get extra care such as more scans etc if you do consider another pregnancy or offered to investigate the mmc's?

[pukekos]

Hope your all doing ok ladies and current pregnancies progressing smoothly so far. Sorry you’ve all found yourselves here too.

I had tfmr 12 months ago for T21 and currently 6 weeks pregnant. Keep replaying the phone call last year when I got results and not quite sure how I’m going to keep it together for the next 6-7 weeks this time.

[Mama0987]

Hello Ladies
Can I please join
I got CVS results yesterday that my baby has T21 and going in for tfmr tomorrow I'm 15 +2. We've had 3 mc in last year too I do have a healthy 4yr dd and my partner has 5yr ds both by previous relationships. We decided to stop trying after the mc's but wasn't preventing it either, I got pregnant within a month of stopping ttc!
How did you decide to ttc again? This journey has been long and very painful for both of us my partner thinks we should just focus on the children we already have, but I don't I want to complete of my family but at 39 time is running out for me.
I'm terrified about tfmr does anyone have any advice on how to cope mentally and physically afterwards?

It has been comforting to read your posts and I wish all of you lovely ladies either ttc or pregnant a healthy pregnancy and baby.
XXX

[whyhastherumgone]

Hello, sorry this fell off my threads I'm on list.
Sorry to the new posters who have found themselves here too.

@pukekos this must feel like the longest wait to get to the 12 week point with the results, how are you doing? I hope everything goes okay for you this time, it's so stressful.

@mama0987 I'm so sorry. I hope it went as smoothly as it could and that you are home and recovering as much as you can with lots of real life support. I'm sorry I didn't reply in time before you went for the procedure - I don't think there's any right way to cope with it mentally, you just get through it however you can. I know that probably sounds vague and unhelpful but I found some days better than others - I started feeling a bit better once the physical side effects such as bleeding and soreness, started to go as I didn't have a constant physical reminder. Some days were OK, some were awful and I cried a lot, others were just exhausting and I felt numb and apathetic towards everyone that wasn't DH.

I'm still having apathetic days, I work for myself and have tried to get back into it again picking up a little as I'm terrified I will end up with no work at all next year, but it's tough. I find I just can't bring myself to care about things that seemed so important before - work dramas or issues or deadlines etc. I just don't have the patience for it when people act like the world hangs on this stuff. I suspect that's completely normal though.

I hope everyone is doing ok.

[Hereslookingatyoukid]

Hello, I just wanted to join in to hopefully give you all a little bit of a light at the end of the tunnel story. We were very lucky to already have one DD age 2 when I found out I was pregnant again but I had a TFMR at 23 weeks in Nov 2012 after our second little girl was diagnosed with HLHS - a severe congenital heart defect plus other issues with her kidneys. Obviously at such a late stage in my pregnancy the process was incredibly traumatic and something I have almost blocked out of my mind. The following year I then went on to have two miscarriages about 9 months apart at 11 and 8 weeks respectively. At this point I thought that was it and we resigned ourselves to not adding to our family further (I still had that yearning for another baby though that just would not go away) Feb 2015 I was feeling really unwell and went to the doctors where they took a urine sample to aid their investigations and it came back with the news that I was pregnant. The next few months were the most anxious of my life and that anxiety still lingers round the edges of my every day life but I got through the pregnancy with amazing support from my midwife (who organised counselling for me every week throughout) and family and now have another gorgeous DD who has just turned two. My heart goes out to all of you who have been or are going through this process and all of the trauma that involves. If you haven't already been pointed in the direction of a charity called ARC (antenatal results and choices) I can hugely recommend them for their expertise and support for anyone going through this awful experience. Much love to you all ❤️

[weasledee]

Hi hereslooking,
That's a really helpful story thank you.
We're going to give it till the new year and decide if we're going to try again, although your story does give me hope x

[Hereslookingatyoukid]

@weasledee I will keep everything crossed for you! Glad sharing was able to help you a little bit; it's such an isolating experience isn't it and I think one that should be talked about more often (although I totally understand why it is often too hard to do this). Hoping you and everyone on the thread has a lovely Christmas!x

[KTD27]

Just wanted to update with lovely news for the new year. Baby is all present and correct and chromosomally normal. We are thrilled

[Mama0987]

Hi Ladies

Thank you for your support, although I haven't responded I have been reading. Freya was born after 20 painful hours of labour on 8th December, the consultant said she wouldn't of made to full term as she was clearly not as she should of been. It killed me to leave hospital without her ( I know that doesn't make sense because it was my decision to tfmr) then I was rushed back into hospital days later with sceptic shock. Thankfully I did recover and allowed to leave just in time for Christmas. Freya's funeral service was on 2nd January which was beautiful. Now it's all over I can't cope I dont regret the decision, but feel so sad and empty I wanted her to be healthy baby and wish she was still inside me and those test results were different. My partner has been amazing with putting up with me. I don't deserve him. Normal routine has resumed on the surface but underneath I am still physically and mentally in so much pain. I still yearn to have a healthy baby and complete our family, but think I'm too late at 39 I can't put my loved ones through this again.
Can any of you offer me any advice to get me through these next few weeks as I dont seem to see any light through the tunnel.

[CyclingFanGirl]

Hi Everyone,

I'm so sorry for all the losses that brought us here

Mama I'm so sorry for your loss. Freya is a beautiful name and she will always be your little girl.
We had a termination after our boy was diagnosed with a fatal anomaly earlier this year and like you, I found leaving him behind as I left the hospital nearly destroyed me. There is light at the end of the tunnel, the grief is still present and some things set me off crying again, but the raw pain has eased. I haven't any magic suggestions, it is mostly a product of time. I spent a lot of time drinking cups of tea with friends, avoiding newborn babies (friends all understood) and talking to anyone who would listen (other parents were easier to talk to than people without children). For me 2 months off work helped, and my GP was unquestioning in providing fitnotes, but actually I needed support to return to work as it was much harder than I had expected. I have also accessed support from SANDS who have helped me understand that grief and the trauma of losing a baby are complex and will do weird things to your memory and concentration as well as your mood. I think the most important thing is to be kind to yourself physically and mentally, do whatever feels right and don't judge yourself (because no-one else will be judging you).

[weasledee]

Hi mama, really sorry to hear your sad news, can't imagine the pain you're going through. I had a tfmr at 14 weeks and that was bad enough!
All I wanted to say is that at 39 you're definitely not too old to give it all up just yet :)
Give yourself time to heal and the when u feel ready, consider trying again....
Look after yourself x

[Mama0987]

Awe you ladies are so kind thank you CyclingFanGirl and weasledee for replying so soon. I've just had a emergency appointment with mental health nurse who has prescribed something to help me through the next few weeks I've been on diazipam but I don't want to end up hooked on meds. I will call SANDS and see if they can offer some support as I feel as if I've lost my mind and I have to go back to work next week and there are 2 people on my team who are pregnant and I am dreading having to tell and explain what's happened. I suppose I will just say it was my 4th miscarriage!

Thank you again ladies xx

[Catra]

I'm 39 and I had a TFMR for Down's Syndrome at 15 weeks in August, picked up by the Harmony test and confirmed by CVS. Needless to say it was heartbreaking but the physical aftermath was even more horrendous and I was passing ginormous blood clots for 6 weeks as Ihad to undergo major surgery to stop it and I honestly thought I was going to die.

I was pretty stunned when DH & I conceived again the first month of trying and I am now 12 weeks pregnant and awaiting the results of a second harmony test. I had expected to receive the results by now and I've been an absolute nervous wreck, checking my inbox every five minutes. I honestly don't know how I will cope if this same thing happens again and my heart goes out to everyone on this thread, especially those where lightning has struck twice.

[Mama0987]

Hi Catra

We were both on same situation, both 39 with tfmr T21. Mine was only weeks ago...wishing and praying your results are ok. Did you and OH have any tests done after tfmr?
I am unsure if I can go through it again but the yearn for a child of our own wont go away (we both have a child by previous relationship).

Sending you positive thoughts

Xxx

[Catra]

Hi Mama,

I'm so sorry to hear about your T21 tfmr - it must be incredibly raw for you still - a few weeks in I was still a wreck, crying every day, barely feeling able to leave the house. It took about 2 months before I began to feel remotely human again. The main thing that helped me through it was having an incredibly supportive husband and trusted friends to talk to, rather than bottling it up. We took our son home and buried him in our back garden and commissioning a custom made stone for him also helped.

We underwent blood tests at the same time as our CVS which confirmed that our son had the T21 type of Downs as opposed to translocation, the latter of which carries a far higher risk of reoccurrence. We were given odds of 0.74% of the same thing happening again and this combined with the fact that neither DH nor I have any living children made us keen to start trying again as soon as we were able.

Despite this, these past 8 weeks since I found out I was pregnant again have been agonising. I've read of so many cases of the same thing happening to couples twice against the odds that I can't afford to get my hopes up. As of today, there's still no new about our Harmony results - I can't eat or sleep with worry and I just wish they'd hurry up so I don't have to suffer any longer in this limbo.

Thank you for you positive thoughts. I will update as soon as I have any news.

xxx