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.

No, it's very interesting. As I've had t18 completely missed by nuchal and scans I feel I'm stuck with having to have a cvs. But I bleed in pregnancy too, which made the bleeding after the cvs even more awful as it was the worse I'd ever had and I felt I had caused it. For a while I was convinced the results would come back clear but I'd miscarry anyway. Who knows what would have happened, I've certainly never had so much pain and bleeding before but I'll never know if I would have eventually recovered.

I seem to be a magnet for low risk horror too though which makes the figures meaningless as you just know you'll be the one. Then again, you weren't the one at all with your fourth attempt and neither might I be. Seems impossible to even imagine from where I am now, but in time it might feel like a risk I'm prepared to take.

I think I have to accept that a CVS is just part of the risks of pregnancy for me. It's incredibly frustrating that it doesn't even pick everything up, obviously organ ageneses and neural tube problems being examples, but it would rule out chromosomal stuff which has been my speciality so far.

They are working on extracting fetal DNA from a maternal blood sample to avoid invasive testing. If they crack it I think that will be an enormous step forward. I gave my blood and cvs samples to the researchers and I hope everybody else does too, not for us but for our daughter's sakes.

The CVS risks are very low though - and they are consultant-dependent, aren't they? so you can choose one with better than average risk history, too.

I have to sit on my hands when people talk about screening. So many times you hear 'well I wouldn't ever terminate, but I'll have it for reassurance'. Which to be fair was possibly what I had in my head before it all went wrong. I hated it when a friend who I did tell about the first termination said 'you're really brave, I look at my two kids and I know I couldn't have terminated', which wound me up because my baby wouldn't have made it. And actually I'm not sure people really know what they would do until they find themselves in that position....

My personal bugbear is people assuming that screening / testing will only show Down's at worst and then thinking it's up to them whether to continue or not. Most haven't heard of Edwards, Turners, Patau etc and have not,
fortunately for them, heard the phrase 'incompatible with life'. I didn't have a meaningful choice, there was never going to be a baby.

I don't think people know until it's happening to them but I think once it has happened to you, you know exactly what you'd do in future. I would have terminated because of Down's even if I hadn't been told this pregnancy was failing, that just made it a less difficult decision.

It's got to be easier this time almost nobody knew I was pregnant again so I'll not have to keep explaining what happened and listening to a load of crass comments. I didn't hide that I'd terminated last time as I felt no stigma about it, but I'm sure it led to all sorts of judgements being made about me privately. Fortunately I don't care what most people think, walk a mile in my shoes etc.

I think it's easier when people don't know. I don't like the sympathy. Prefer not to dwell on things in public.

Hopefully you will be getting ready to go out and distract yourself.

I hate being the object of pity, no matter how well intentioned.

Concert was lovely and I'm glad we went. Exhausted today though and have passed more tissue so I can't help but think I'm going to need surgery after the scan on Tuesday. I desperately want to be over this and back to normal but I'm having to plan childcare etc in anticipation of another potentially disrupted week.

I really hope you can avoid surgical intervention. It seems crazy that that can happen twice as well as chromosomal abnormality. Hopefully the tissue is the end of it.

hi, i had retained tissue and it passed over time with no need for surgery. hope it is the same for you. there is so much focus on the termination it's hard to remember that you have just given birth and need to rest. I hope everything settles down physically over the next couple of weeks.

I was just reading what you said about the future and the detailed scan. I had one with this pregnancy following a nuchal. The nuchal was 1 in 1700 which was ok and with the detailed scan I didn't feel like I needed to go on to cvs as (in my view) a very sick baby was ruled out. i realised i ran the risk of still having a baby with chromosonal abnormalities but i was prepared to take the odds. I don't know what your consultant meant about the detailed scan missing some downs babies. Surely if there are markers they are likely to be picked up? - maybe it's that many babies dont have the markers. I felt pretty reassured after mine and with a heart scan at 19 weeks in addition I was comfortable for my pregnancy. I think you have to decide what level of risk you can accept but I would definitely recommend the detailed scan and nuchal.

I know that's rushing ahead a bit. Do you have an appointment with a geneticist? or did you have genetic testing last time?

I agree with others that having a baby is not the be all and end all but it felt like that to me especially the first time. This time I was not at all sure if that's what I wanted and was very lacklustre (sp?) about the whole thing. I found it easy to blank the whole pregnancy and it was quite an odd and different experience, not dreadful though.

Thanks Manitz, that's interesting. I can completely understand the lacklustrousness (?!).

My consultant says that only 90% of chromosomal problems are highlighted by NT and bloods and that only 50% of Down's babies have any soft markers. I have no idea whether this is true but she's said it a few times when discussing CVS with me. All the medical staff I've spoken to have been very pro-CVS but even without their influence I don't trust scans and bloods as they've failed me before. I also just can't see me being able to have the optimism that things might be ok. I suppose it also depends on how long it takes me to get pregnant again. Five months this time which felt like an eternity and I've agreed with my husband that we need to take a break to recover from this a bit first.

I obviously really hope the tissue has now passed, last tine it was two weeks until I passed the last bit. It was extremely unpleasant.

I was told the same thing about T21, Eggletina. Ie that detailed anomaly scans would pick up the other trisomies, but not necessarily for T21. What I understood from that was that they would pick up a baby with T21 who had associated heart problems,for example, or other such problems, but not a baby with T21 who might not have those serious health issues. For me, that was enough. But we all have different thresholds, experience, limits.

One thing I did differently when conceiving Babycant was make DH take mens fertility supplements too. Admittedly this was because Turners is due to defective sperm, but also I realized I (like others on this thread) seemed to have an over-cosy womb and I conceived v easily - maybe too easily, because I would conceive with defective sperm etc. So I made him take supplements too to ensure better quality sperm in case my eggs got overkeen about choosing dodgy ones that more discerning eggs might reject.
(Ignore if this sounds like mumbo jumbo!)

Not mumbo jumbo at all, I used to be very sceptical about most things but I genuinely think the evidence-base around fertility is fairly sketchy so I'm happy to try anything (within reason!) I didn't know that about Turners. I've read that with the others it's 90% likely to be the egg but DNA fragmentation in sperm can also be a problem. I will get supplements for him too anyway, I don't think we'll TTC again until a few months have passed so I feel as though we might as well do whatever we can to improve our chances in the meantime.

That's what I thought, too. And that OK, it might not work, but all we'd lost was money on the supplements.

I am interested in the apparent lack of knowledge around why abnormalities occur more than once, when it is statistically unlikely. And when consultants insist it is entirely random. Am sure it can't be.

I agree but I think the problem is that it affects such a small minority of people that in reality, nobody will fund any proper research.

How was the scan today? Really hoping it didn't show you needed surgical intervention.

It did, showed 2.5cm of lining left, no visible tissue though, so the consultant gave me the choice and I've decided to let things take their course. The thought of a D & C was awful, not the actual procedure but more the childcare, sick leave etc. I've to have my blood counts done weekly to make sure I don't go anaemic but other than that just wait for it to shed naturally.

Eggletina, I'm glad to hear things (at least the physical side) are coming to an end. What a time you have had.

I wanted to chip in and say that after my termination, I did take high dose FA (nor prescribed, just made up from Holland and Barrett-bought smaller doses) based on something I read on the TTC/pregnancy thread. I think it might have even been bezzyk or cant who mentioned it (there is a study about the relationship between spina bifida and T21 conducted in Israel - easy enough to find through google). Mr G also took men's conception vitamins. Our thinking was that if we could avoid the 10% chance that it was defective sperm causing the trisomy, or improve the chances of our egg and sperm splicing properly, then we were going to do it, even if it wasn't totally accepted by the medical establishment. It made us feel a bit more in control and less at sea.

As you probably know also, in this pregnancy I had cvs in the absence of any clinical indication from my scan, for peace of mind, and exactly for the reasons you mention upthread.

Thanks Ghislaine, I am definitely going to get his and hers vitamins but I want to do a bit more research into the FA, I work in medical research so I have access to a lot of data. I'm interested in whether any other studies have been done, sample sizes, outcomes etc.

I'm very interested that you went straight to CVS as it doesn't seem to be that common a decision to make. I'll be absolutely terrified of it if there is a next time but I know I could never not have it. (I hope you're keeping well anyway!)

I had a long talk to a different consultant yesterday who agreed that the CVS was likely to have caused the bleeds as the pregnancy was inherently faulty. She also said it was unusual for this to happen twice and also that people put themselves through multiple failed pregnancies and nobody would judge me if I tried again. She was very good and I felt better for her spending time talking to me.

I am glad you found a helpful consultant and that the issues around cvs and the bleeding were explained.

Fwiw, I didn't take the mega dose of folic acid, although I can't remember why not! Maybe I just didn't know about it. Or maybe it was because people kept linking it to avoiding T21, which I hadn't had.

I hope the lining sheds itself without trauma. Great to avoid surgery. How are you feeling now? You said you were scared of breaking down, but you have been incredibly calm and strong.

Well I'm on antibiotics as I've an asymptomatic ecoli infection. Lovely. I'm becoming quite convinced by the mega dose FA stuff so I'm going to top up my Pregnacare with additional folic acid.

Feeling pretty low really but trying not to dwell on things, it's very hard though.

Ecoli?? How did you end up with that- something from hospital?

I haven't heard anything against the extra folic acid- and it does seem to work for many women - so it sounds as though it would be a good idea to take it.

I found it helped to try to have a plan.

Has the bleeding stopped? Mine was stopping and starting for ages.

Ecoli lives in your gut harmlessly but can contaminate very easily, it's not a very nice thought.

Bleeding continues, no diminishing yet so they've said I'm to see how things are by mid week and I can be rescanned if I want to see how things look. The staff at the clinic are very supportive of me not having chosen the d&c and are being very helpful with aftercare. They are keen for me to see a counsellor but I really don't want to. If I'm repressing things it's for good reason and what I really want is to get physically well. Mentally I'm doomed anyway after all this!

I know what you mean about having a plan. I'm planning to go through at least one full cycle and at least 8 weeks of taking higher level vitamins before even considering trying again.

I felt as though counselling wouldn't help me because there was nothing I wanted to talk through. Of course that might have in itself been a clue that perhaps I did need to talk- but I just wanted to handle it by repressing it.

There are two aspects to termination for medical reasons. One is the loss of that particular baby that could/should have been. The other is the fear that it will happen again and that you won't have a baby at all. The first is manageable I think if very sad - the second is the hard part, because it's the fear of the future. I have to admit I didn't like talking about either!

I made a plan with the consultant too. To have a scan at 14 weeks, as well as the nuchal etc at 12 weeks, to check on kidneys. That helped me because no way could I have waited until 20 weeks for the kidney check - but 12 weeks was too early. I also had an early anomaly scan (19 weeks) and a follow-up one at 23 weeks, and then 4 weekly scans until the end. And the consultant was to do all my scans until 27 weeks, after which it was a normal sonographer. That didnt quite work as he was ill for my 19 week scan, so a registrar did it instead, and I found that hard as she didn't get my level of anxiety really, but still, it was the plan.

I waited one cycle to try again, but it took 6 weeks for my period to come back anyway.

You do sound very much in charge of things. Well done. I think I was, too, only because I was scared that otherwise I would fall to pieces. Having said that, I did lose the plot at the cremation and cried throughout. A bit of release, I guess...

My plan remains the same as this time which is CVS at 11 weeks and in the unlikely event I got through that, scan at 16 weeks with my consultant but I think I would ask for an earlier one at 14 weeks. They might change what they recommend anyway after this experience.

I also don't want to talk about any of it in any detail, I completely agree with your second paragraph. I do think repression has a role in helping you come to terms with things gradually, so I am not too worried - I need to do whatever gets me through the day.

Yes,the repression doesn't seem (touch wood) to have done me too much harm.

I think a 16 week scan is more usual than a 14 week one (the 14 week one can't check eg the heart the same way) but I wanted 14 weeks because it was the earliest chance to check on the kidneys. Don't see harm in asking for both though. One thing I didnt want was an early scan (whereas others here have really wanted/needed that). The reason for this was because I had early scans in both failed pregnancies, at 8 weeks and 9 weeks respectively, both times for bleeding, and everything looked fine. The first time, the 8 week one, they said all was definitely well, and having had no previous form, I accepted that and wandered into the nuchal scan with quite a lot of confidence. It made the shock even worse, I think. The second time, I was better at realizing that a good scan at 9 weeks didn't mean anything, but still seeing a baby on a screen makes it less easy to distance yourself. So when I was pregnant with Babycant, I did have some bleeding again, albeit less than the other two times, and I decided not to bother telling anyone and just wait for the nuchal, because I didn't want to be going backwards and forwards from the hospital constantly and having hopes raised and dashed. Personal decision though, I know, as most people here have preferred the extra early scan.

Oh and also I had the nuchal results and bloods telephoned to me - they said they would ring whether I was high risk or not, because I needed to know. It took 24 hours. I know in some places you can get the results straight away and decide whether to cvs or not on the spot.

In the interim I got so bitter that I couldn't bring myself to visit a friend and her newborn, because she had v easy conceptions, pregnancies and births and I felt bitter. I also found myself feeling jealous of a bump that turned out to be a beer belly and belong to a man....

Haha, I remember your beer belly envy from before.

I was offered a 7 week viability scan this time which I had but I was happy with that as that was all it was, basic viability. I was also offered weekly scans if I wanted them but I thought I would find that more stressful. In the event I had them 7, 10, 11 and 12 weeks due to all the bleeding. I never look at the screen during scans as I don't want to see a baby I'll probably never have. I've always felt like that about scans and never dared look. Odd I know, but in two out of three pregnancies it turned out to be true.

I've had early bleeding in all three pregnancies too but I prefer to get it checked. Not that there's anything to be done about it.

I'm incredibly bitter about some people more than others. It's awful and one of the worst things about this. I've never been a competitive or jealous person before all this happened and I hate what it's brought out in me.

The bitterness fades...

How are you now, Eggletina? will they scan you again soon to check for retained products?

I hope you are OK.