Facing second termination for medical reasons this year...

[EggletinaClock]

I know there's the thread for post termination support as I used to be a regular poster, but I wanted to make an appeal to a wider audience.
I had a termination at 22 weeks in April 2011 for Edwards' syndrome (only detected at my 20 week scan as a result of a heart defect - NT and bloods came back as low risk). After several months ttc I got pregnant again and opted to go straight for CVS at 11 weeks. Unfortunately, the sample was contaminated with my cells and then there were Xmas Bank Holidays, so all in it took 19 days for me to get a result. That eventual result was that the baby has Down Syndrome.
From the day of the CVS onwards I have been bleeding and had mild to severe cramping, I've been in hospital five times and two consultants have said they think the pregnancy is slowly failing anyway as it is inherently faulty. I have opted to terminate to end this utter nightmare. As I desperately wanted to avoid going through another delivery, but as I was over 12 weeks, I was referred on to a private clinic. I was supposed to have the termination surgically yesterday but it was cancelled at the last minute due to a
potential airway problem. So now I have been left with no choice but to go through with a delivery. I took the initial pills this morning and will be admitted to be induced on Monday by which time I will be 14(2). I am not too worried about the delivery as it can surely not be as bad as the one at 22 weeks. They have also warned me that as the pregnancy is failing anyway I may well not get to the inducement in Monday so I am expecting miscarriage at any point.
At no point during this pregnancy have I been happy, merely anxious and fearful and all my fears have come true, again.
We are to be referred for genetic testing and have been advised not to ttc before then. My husband is refusing to even contemplate trying again. I still so desperately want a second child (I have one healthy daughter) but I fear what might happen should I conceive again. Time is not on my side as I am 38 and getting ever closer to 39.
I would really appreciate if any of you with similar experiences of repeated tfmr could share them with me. Particularly what you considered around trying again or giving up. I know there are women here who have had two terminations for medical reasons (Manitz and Cantdothisagain are two I remember.) How do you cope? At the moment I feel very calm, I was braced for bad news, and I have little of the fear I had about the induced delivery last time. Is it going to hit me later or am I toughened to this now?
Any help or advice gratefully received.

I wanted to say our experience was similar to princess'. Out of 19 embryos we got 3 that grew to day 5 and were normal. All the rest either arrested or had abnormalities. Interestingly for us, none of the abnormals were T21.
Also I agree with the 5mg folic suggestion, have read in several places it is good and I had been on it for 4 months before we did our ivf.
Finally sending you hugs

Interesting, but pretty damning figures for the IVF embryos. IVF even without PGD, is absolutely not an option for us financially and only has a 20% success rate anyway. I read research recently that suggested that the drug treatment required to harvest eggs for IVF was likely to cause DNA damage to eggs that might have originally been ok and that often accounted for high failure rates (where there hadn't been PGD of course). If I have that level of damage naturally then I have no chance of a successful pregnancy.

I'm 38, Princess. Normal pregnancy at 35, Edwards at 37 and Downs at 38. Feels like a grim game of Bingo.

Nice to hear from you Bezzy, it goes without saying I'm sorry you've had repeated losses too. I only know about the usual folic acid recommendations so I'll do some research. My problem is not that I miscarry but that I don't! It's as if my quality control mechanism doesn't screen faulty embryos and reject them. That must be easier than repeated terminations?

Anyway, I've started thinking that I am happy to try again in theory but my main fear is another medical termination, there's no getting away from how downright traumatic they are. I think I need some sort of assurance that the huge delays in the CVS result this time are unlikely to mean the same thing would happen again, if we got to that point. I know they can't promise me that, but if there is at least no proven link that if it has happened once it is more likely to happen again.

Eggletina I'm so sorry to read about the last week for you. I would have obviously have tried to give you support but was not really online much this week. I often read your posts and remember talking to you when you had your last termination.

i guess anything i say is now out of date as when you asked for experiences it was befor ethe termination and now you are coming to terms with life. personally i was in a similar situation (first one at 25/26 weeks and second at 14 for T21) so found no 2 much less traumatic but just lost my lust for life and did reassess my life leading to me giving up my job and some friends.

i was 37 and ten months when I had the last termination and gave birth to a healthy baby in september (11 months later) and am now approaching 39. I don't know if that helps you. take care, I'll look in a bitmore often if I can. x

cross posts. i was told similar to princess and have come to conclusion that i have a cosy womb so don't miscarry when i should which helps me x

i meant helps me cope...

I think we were telling you that to try to make you feel better! In that I'm 34 and it is normal for a lot of eggs/ embryos to be abnormal. Doesn't mean there is anything wrong with me, or you, just how it is. Most of those abnormals never implant so no positive test, or cause v early mc. We are very unlucky to have had the type of abnormality that sticks around a while unfortunately.
Array cgh ICSI at my clinic has a 73% clinical pregnancy rate (hb at 8 weeks). I am one of them and our t21 risk this time was 1 in 25000. We also have 2 normal frosties if we want a sibling. It is expensive, cost us £6000 but the success rates are higher than 20%.
Anyway sending more hugs. You have been through he'll, I'm so sorry.

I know what you meant Blacktreacle (and how you meant it - thanks!), that's why I mentioned the damage the IVF drugs can cause. I suppose it's just a scary thought that there could be that level of damage there already!

Hi Manitz, good to hear from you. We do sound very similar in our experiences. I think I had already lost quite a lot of interest in life really after the first time, so I doubt much will change. For me it's more that the lifeline I saw getting pregnant again as, feels like it's been taken away.

hi eggletina, i am not surprised you had lost your interest in life as you were still in the first year of grief. my first termination was 4 years ago now so I had recovered a lot from it by the time of my second one so things weren't as raw. I really found it hard to bond with this baby when he was in utero as I could not believe I would ever get to the end (no probs on the outside). anyway when I look back to october 10 I was in a complete daze so I can just imagine how you are feeling now. Prob best to shut down as much as you can and not think too much about anything at the moment. take care. x

I agree with Manitz about the shutting down. Other random things helped me - the sea, crashing on a windy beach; sunshine; etc. I found I needed to stay numb and as detached as possible. Distraction helped me. But we are all different.

You're right about needing to see other endings than a baby. Not because you can't have a healthy baby (and honestly, you are NOT old) but because you need to take the pressure off a little. Not yet though, its too soon. For now you just need to protect yourself.

Thank you Manitz and Can't. I've definitely shut down. Just saw my counsellor (this was a regular appointment as I've been seeing her since the last termination) and I didn't even cry, although she nearly did. I feel very strongly that for the moment I have to keep calm, get as healthy as I can again and just keep going.

I did notice half way through my session that I had my trousers on inside out. I'd even managed to button them...

Still thinking of you here too, Eggletina.

I am amazed that you are still standing, no matter how wobbly inside, and I think it shows impressive strength that you sound so 'together' when writing on here.

I went through a phase of thinking 'why me?' until I realised 'why on earth NOT me?' which I found strangely comforting .
If you can find the strength to do whatever you need to do to get through this and come out the other side, you will have done brilliantly.
Did you know that clothes worn inside out protect against witchcraft ? According to my (late) very superstitious grandmother .

I took high dose FA for some of my pregnancies, Aspirin for some and nothing for others (that was my 'I just don't give damn anymore' phase) and out of 8 pregnancies I have 4 healthy DSs, the youngest when I was 44, so I jolly well feel v. v. lucky and able to now take some strength out of the difficult and sad times. No idea how I'd be if we had not been successful in the end.

Sadly, happy endings are not a given. Living with that uncertainty is so very hard - until you either succeed and or make your peace with that it was not to be .

Sending you much love and strength.

Oh well, no witches got at my legs last night then!

It struck me last night when I said to my counsellor about trying to get pregnant to the fourth time and I thought 'Fourth! How many times am I going to go through this?' It's like I used to be a normal person having a second child and then when that went wrong I was plunged into this dreadful world and I don't know whether I'll escape one day or whether these losses will define the rest of my life.

Yes I know what you mean. I've had 5 pregnancies and at one point started to feel like a wretched Victorian lady giving over her life to doomed pregnancies. Now I can look back at that and think, well it took a while but I've got my two children. I hope you are feeling ok - or as ok as it's possible to feel in these circumstances. You have a future - it's just taking a while to reveal itself. xx

Eggletina I know what you mean about being defined by losses. I have been pregnant 9 times and have 2 DCs. FWIW I think it does gradually fade. I no longer feel consumed by what happened, rather I feel that it was part of my journey. Sorry if that sounds trite I just can't seem to get it across.

Ha, I know what you mean about some Victorian martyr to breeding but for me it is some half remembered Queen who had something like 12 pregnancies to produce one heir. Who then probably died in infancy anyway. Must look her up, the poor soul.

The hard thing is that I know that if I managed to have a second child I'd feel exactly the same as you two and then I would move on. It's the fear of that not happening and not knowing when to stop trying that unsettles me the most. And of course nobody can answer that.

I was really upset and crying to my mum about not getting pg again after our loss. She said to me, having a baby isn't be be all and end all of your life, you aren't Katherine of Aragon.
It made me laugh.

Queen Anne. Eighteen pregnancies, only five went full term and only William survived his first year. And then he died.

Blacktreaclecat, your mum's comment made me laugh!

Eggletina, when I had my booking-in appointment for Babycan't (my fourth pregnancy too - first was DD1, then the two that went wrong) the midwife wrote VERY HIGH RISK everywhere. It wasn't my usual midwife and she lacked any compassion or even interest in my history. She just seemed annoyed to have more paperwork to fill in. I felt like some sort of freak. It was very different when the normal mw came back and was kind.

Actually at my 16 week mw appointment, they were running v late and I met a woman in the waiting room who had had three miscarriages (no living children). I told her about my 2 losses, which I don't, as a rule, because she had been through the mill too. She was about seven weeks or so; I was 16 weeks; she was scared of the first scan (after three missed mc), I was petrified of the anomaly scan. We both doubted we'd have pregnancies that worked out. And yet we both did.

Pacific, wow to your four healthy boys. That's fab. I couldn't ever face being pregnant again,I must say. I am still terrified by scans even after Babycan't. I feel I have been incredibly lucky to have my two girls. And yet for ages I felt so unlucky, as others below have said.

Eggletina, do you have comforting things planned for the w/e?

I am actually going to a concert tomorrow evening. Tickets been booked for ages but it's soothing classical stuff and sitting down so we're going to go. Must try and dress myself properly. I'm going to stay at my parents on Sunday and Monday as I don't work Mondays.

Took my daughter to the GP this evening and ended up telling him what had happened to me. He has given me somethingorother acid to reduce the bleeding as he agreed that I looked fit to drop.

If I do follow the same pattern as you Can't I will be the happiest woman alive. I bet you've always wanted to be an inspirational figure!

Concert sounds like a good plan. I wish I'd thought of reducing the bleeding; it seemed never-ending! Good on the GP for thinking of it.

I meant to ask before - I know you were going to have a CVS whatever the nuchal risk - but did you have a nuchal scan first?

Not that it matters; it's just curiosity.

No and I wish I had now. I would still have had CVS regardless, as my nt scan was low risk last time, but it would be interesting to know whether it would have been picked up this time.

My consultant says the CVS caused problems because it was an already faulty pregnancy. I'm not so sure. If there is a next time I have thought I would have to have another CVS and hope for the best, but it would be incredibly hard to agree to it again. However, it would allow time for a surgical termination. I feel like a bit of an expert in medical terminations now, they don't scare me too much but they are incredibly upsetting and unpleasant and I'd like to not have one again.

The option of waiting for an amnio is not one I'm keen on as you can feel the baby moving by then and that's heartbreaking if you get a terminal diagnosis. Also I seem to start showing at about 8 weeks so I couldn't hide a pregnancy that long. The other option of leaving things to chance is not one I'm keen on either, particularly as chance has dealt me this twice now.

I spoke of paying for a very detailed scan at the FMC but my consultant said that even those won't pick up 50% of Down's cases in particular, as there won't necessarily be any soft markers. It's less likely for t13 and t18 though but as I would still terminate for Down's it wouldn't reassure me.

I'd be fine about another CVS if I hadn't had all the pain and bleeding after this one. What did you and others do?

Bleeding has thankfully given me a night off after starting the new pills. You can only use them for a few days but even that will just give me a chance to recover a bit more. The other disappointing thing is that I've still had the breast engorgement and pain after only 14 weeks. I find that emotionally very hard as well as extremely painful. I'm taking painkillers primarily for that now.

Hi Egglet
So sorry to hear about all you are going through. When we had our baby at 24 weeks I requested medication to minimise milk production. I breast fed my three dds for an extended time and would have found it really difficult to have produced milk with no baby to show for it. Can't remember the name of the drug but perhaps you could ask your GP? Sending positive healing thoughts your way.

Hi, sorry you've been through this too. I had the tablets after the 22 week termination and they didn't work and they don't offer them before 20 weeks. I found it enormously distressing last time but this time I think I'm more hardened to everything.

Hi Louzie!

I was going to say that I didn't have milk come in after the first termination, but in fact I was still breastfeeding DD1, so I wouldn't have noticed it much either way. The second time I did have milk come in, and I also found it distressing - then when the milk receded I felt distressed all over again.

I didn't have a CVS, in fact I never have had - no need for DD1 (v low risk); for the second pregnancy, they told me the baby wouldnt make it to term and suggested CVS to try to find a reason why, but the CVS couldnt be done due to placental position so they did a post-mortem instead. The baby had Turners, which is why it wasnt going to make it, but in a way the key point wasn't what the baby had, but the prognosis. The following pregnancy, I was again deemed v low risk at the nuchal stage, and I ummed and ahhed about CVS but I had had bleeding and was anxious, so I didn't. When I got to the anomaly scan and the rude sonographer took one look and ran off to get the consultant, I regretted bitterly not having the CVS. But it turned out renal agenesis wouldn't be picked up anyway on CVS/amnio, so it would have been pointless. Fourth pregnancy, I was pretty much set for CVS, only my risk was v low again (1 in 37000 of DS, and 1 in well over 100000 (can't remember figures) for th other trisomies); I had had bleeding again, and fatal Turners tends to be revealed via the nuchal scan, so I was thinking about the other trisomies, and decided I could live with waiting. What swung it for me was that the risk of mc after cvs is v low but I have had low risk horrors happen twice, and I knew I would blame myself if cvs led to mc. I was most terrified not of a chromosomal thing but another freak thing like renal agenesis again. Oh and I was scanned, detailed scans, every four weeks. But you know even at the end of the pregnancy I was terrified that the baby had a fatal condition that cvs would have picked up. CVS would possibly have reassured me. However I don't think it would, because I was just terrified anyway. Scans helped me more.
What an essay, sorry!....