TTC after pregnancy loss: We're nervous, we're hopeful, we're checking all the charts and taking all the vits!

[BertieBotts]

Welcome back all and welcome new posters.

Hi bean - sorry that you have to be here but hope it's helpful while you are.

MsJuniper - exactly! If I just knew that I was going to have a baby I could get through all this so much more easily - and it would take up so much less of my head space. I think every day I think some variation of 'what if I never have children?' and it feels like such a drain on my energy and life. They do sometimes give me real hope, though - you see women who are so desperate and at the end of their tether and then you see that the very next month will be their month!¡

Hi @beanhunter It's pretty devastating to have everything point in the right direction only to have an abrupt ending anyway. I just wanted to quickly say how sorry I am to hear about your MCs and failed IVFs.

Please remember that 2 weeks isn't a long time at all, all things considered so take the time to look after yourself and wellbeing, though waiting around is also horrible.

We're as sure as that DH's parents and sisters are convinced he has it, I believe that was due to some testing when he was a baby, but I haven't seen any paperwork or spoken to any doctors myself, so it could still be that they're just going oh, it's this, it's definitely this as it's a family thing but it's not confirmed IYSWIM? I know for sure it exists in his family as his cousin sent us a letter with copies of the info they'd got from the fertility clinic in the UK.

Do you know what the nature of the translocation is bertie?

PhD in genetics here, this is my thing :)

**Lisa thank you for inviting me over to the group

I've felt so lonely and isolated over the last year and have struggled to find a place where I might fit in. Hopefully, I can find a safe place here, and offer some support in return.

I'm currently going through my fourth miscarriage in 14 months. Medical management failed on Sunday so back in tomorrow for repeat scan and second attempt. My gorgeous DD is almost 3 and my miscarriages started with the loss of my son at 16 weeks last June. Subsequent losses have been at 4, 6 and now 8 weeks with no cause found.

I've had late and recurrent miscarriage testing, uNK cell testing and parental karyotyping. Only thing that showed up following MTHFR testing was that I'm heterozygous for the c677t mutation. The private clinic felt it wasn't an explanation though as I only have one copy of the gene, not two. But that contradicts some of the research coming out of Australia so I do find myself wondering.

I've asked my GP for a referral to Prof Siobhan Quenby in Coventry and he thinks I should be referred to the fertility clinic at the hospital too. I've never been as recurrent miscarriage testing is carried out as standard after a late loss. But maybe they'll carry out a laparoscopy and hysteroscopy? Or even look at things like egg and sperm quality? Doubtful as we have a child but we can always ask?

Sorry we all find ourselves here

Nope, all we know is the words "genetic translocation" and that DH has been told (rather dramatically IMO) that he probably won't be able to have children. He's never had genetic counselling for this before. Though, as an aside, that could be his pessimistic interpretation - his current prognosis for his broken foot is that he'll always have a flat arch on that side and he'll need to be careful of overexerting it, wear decent shoes, watch his weight etc but what he's taken from this is "I'll never be able to run around the park and play football and climb with my kids".

From my exhaustive googling I understand that if the translocation involves lower number chromosomes then it's more likely to result in miscarriage/failure to conceive but if it involves higher number ones then there's a possibility we could have a pregnancy resulting in a late loss or a child with disabilities.

But overall there's only a 50% chance that the translocation would become unbalanced, is that right? Because there are four possibilities:

Baby gets 2 broken chromosomes from DH but they match up so baby becomes a healthy carrier.
Baby gets 1 broken chromosome from DH and one healthy one from me resulting in unbalanced translocation (x2 as works both ways around) - resulting in nonviable embryo.
Baby gets 2 healthy chromosomes from me and is healthy.

So if you just go from pure maths, from how I understand it, it should be just that you get the normal chance of conception (say 25% per cycle) halved, and/or once conceived, you have the normal chance of miscarriage (or a bit less, say 15%) plus the 50% chance from being unbalanced, so 65%. So that's how it can take couples months or even years to conceive. Perhaps the maths needs adjusting a bit because I've put the 50% chance on top of another 50% chance... or there's other info I'm less aware of but to me it seems like it absolutely should be possible, it's just a question of time and enough attempts.

Hi beandot so sorry to read of your recurrent mcs. Can I ask whereabouts you are? I was booked in for a hysteroscopy at St Mary's in Paddington although have since become pregnant again so I can't tell you any more, except that you have to be a couple of cycles post-mc. I have also been taking part in some medical trials and had an endometrial scratch which might have helped. It sounds like you have already been very thorough with your approach so far.

Blimey Bertie, that's a lot to get your head around. Jumping ahead some, if DH does get a positive diagnoses, what can they do to increase your chances? Sounds like a numbers game, and you sound so on top of everything, but it must be very difficult not knowing what's going on and carrying on anyway. You guys seem like such a good team from what you say, I hope so so much you get your baby soon.

So sorry for your losses Beandot, god you've been through a lot. And sorry for what you're going through right now I hope they're taking care of you and you're able to rest. It's heartbreaking and takes such a toll physically. I don't know if you've had surgical management before but with my MMC medical management failed twice and I ended up having an MVA, which I wish I'd done earlier as it just wasn't going to happen on its own. I obviously hope it does for you, and a second dose works! But I was 100% against anything surgical when we found out and eventfully there wasn't an option and it was so much quicker than I'd feared and meant it was over and I could rest and be without the pain.

Juniper is our poster girl for a happy outcome after many painful losses, I hope some of her luck rubs off on the rest of us

I'm under my local RMC, all results have come back clear, but they don't test for NK cells.

Ah Anne thank you, don't jinx it! But obviously I hope you all have success very soon. I was going to make a rubbing off joke but they all sounded very wrong.

Oh no, sorry love! Didn't mean to at all! I just mean you give me hope, that's all. And I'm wishing you the dullest, healthiest, yes again, dullest most uneventful pregnancy anyone has ever had! xxx

A dull pregnancy, it's what we all dream of (seriously).

I've been fiddling with maths and stats more and think I have the picture.

Using a random number generator I decided to mock up some imaginary couples' TTC journeys.

I kept the numbers simple. On average most couples have say 25% chance to conceive each cycle. So I kept rolling until they got 76 or higher. Then they have a 20% chance of miscarriage, so roll again and anything 20 or lower indicates miscarriage (in which case start rolling for conception again). Count up number of cycles taken to achieve pregnancy at the end.

To simulate the unbalanced translocation, I pretended that any numbers in the "conception" simulation which came out even indicated balanced embryos whereas odd numbers were unbalanced. And I continued each "couple simulation" until they achieved a pregnancy with an even-numbered embryo in the first place.

So sometimes when a healthy couple conceived successfully, so would the same couple with a translocation, but sometimes their embryo would be nonviable, so it would either end up as a non-conception or a miscarriage. And then, of course, when the healthy couple suffered a miscarriage, the couple with a translocation would too (if they had even conceived in the first place, which sometimes they didn't).

My imaginary "healthy couples" had experiences ranging from three couples getting pregnant immediately on the first cycle to one couple who took 17 cycles to get pregnant with 2 miscarriages along the way, and one who took 13 cycles with 3 miscarriages. This is based purely on chance.

In fact all three of the successful pregnancies cycle 1 also applied to the translocation couples in my simulation but the longest journey for the couples with translocation I found was 33 cycles with 4 miscarriages. The healthy couple counterpart to them conceived in cycle 5, no miscarriages. There were four simulations where the outcome was the same for the translocation and healthy couples, and in the other six, the difference was only 1-2 total cycles for two of them, with three needing around 3x the amount of cycles to achieve successful pregnancy and only that one outlier couple who had a really hard time.

Sorry I expect this is really boring to everyone else but I love figuring out things like this! Perhaps I should stick it on the blog.

Can I ask for advice. So decided to do a pregnancy test to check it was all negative after the surgery as stopped bleeding almost a week ago. It's blazingly positive. And it's only a cheapie so not that sensitive.
Called the epau who said retest in a week and should be negative by then. Seriously? If it's as dark as the control line and I'm not bleeding?

MsJuniper congratulations on your pregnancy. How far along are you? What's your history?

I've read Lesley Reagan's book so was tempted to book an appointment at St Mary's but thought I'd see how the NHS referral to Coventry went first. What trials are you doing? Tommy's have sent me a list of the ones they're carrying out and seems I just need to get a GP referral. I can't believe how much I've research I've done in recent days. Even started having acupuncture on Saturday. Sure my OH thinks I'm going a bit mad, the pregnancy hormones are still raging sadly, but I'm hopeful that we'll uncover more if I just get on with it xx

Anne, hi there! We talked about going down the surgical route but I don't fancy my chances. They said "only 1% experience complications" and my response was "we're in the 1% of couple suffering from recurrent miscarriage". That said, we might opt for it if it doesn't go to plan tomorrow! Thanks for your support and good wishes xx

We are too.... Sucks. I so hope it works out for you but if you end up going that route I can chat you through it. I really was freaked out about the prospect of being in hospital at all, got the hell out of the EPU as soon as we could after we had the bad scan.

How far along was this pregnancy? I was 12 weeks, it had stopped growing at 8 and a half weeks but the sac etc was still developing and for some reason it just wouldn't pass. They didn't know what but after 5 days of the first pills it was just stuck. Sorry, it's all awful to talk about But if there's anything that's useful to discuss you know where we are x

@beanhunter I had this. I tested two weeks after my labour was induced, fully expecting it to be negative so I could start to move on and start again but no, strong positive still (this was on a left over frer I had)
I went to the ward to have my hcg levels tested. They were at a measley 9!! 9!!! It took another week until it was definitely negative.

I did find it very interesting though to see how positive my test was at such a low level! Does prove how sensitive they are. Try not to stress if it's only been a week or so, sometimes it just takes a while to fall but maybe do another in a week and if still strong go back and they should scan you to check no left over product they may have missed x

Your dh needs to know exactly what type he has (unbalanced, reciprocal or robertsonian) and of which bits of which chromosomes before they can make any real guesses.

For an average balanced translocation you have a 50% chance of it going wrong and the foetus having an unbalanced translocation (which generally results in death) a 25% chance of normality and a 25% chance of inheriting the balanced translocation. That's the 'idealised' situation. Sometimes they think it balanced but it isn't. However if it's a known familial throng the chances of that reduce. But if you have nothing else 'wrong' then you're effectively doubling your chance of miscarriage from chromosome abnormalities alone (then the usual rate.)

A geneticist would get as much information about the wider family as possible and karyotype (physically look at the chromosomes) him. If it's a known family thing (been in multiple generations) then your chances are higher than if it's a de novo (new) mutation.

PGD would allow you to pick an embryo but it's not without its risks and it's a long gruelling process.

Hope it works out for you - if it's a regular translocation you reduce your fertility but most couples do go on to have healthy babies.

Oh, I thought it was impossible for him to have an unbalanced one since that's generally incompatible with life? I'm not 100% sure on the difference between balanced and robertsonian from what I've read so far.

Yes that ties with what they've told us. They've asked for a family history and said they'll do a karyotype at the first appointment so fingers crossed we should get some info.

I think PGD is illegal in Germany anyway. So deciding on that is a huge long shot as we'd have to go private and probably abroad somewhere.

beanhunter I would have expected your test to still be positive for longer, I'm not an expert obviously but I think all you can do is test again in a few days. Sorry, the waiting around is awful isn't it.

beandot I have been ttc since April 2014 and had 2 mc at 9 wks and 4 at 5-6 wks. Currently 8 wks pregnant. I'm 41 and have a DS (nearly 5). I had almost given up hope but the RMC investigations and this group have really helped. I did the endo scratch/biopsy as a trial which is supposed to help implantation and now possibly doing 2 early pregnancy trials, one to study the heart with weekly scans and one with swabs to test bacteria. St Mary's has been great, we saw Raj Rai rather than Prof Regan which was mildly disappointing but they have made me feel very looked after, especially the research people. They tested for sticky blood and said I did have it but not APS, so I'm on 150mg aspirin daily since bfp. Other things I did were lose 2.5 stone on a mainly vegan diet and take ubiquinol and myo inositol. I tried acupuncture a while ago but it was too much to keep going with. That's everything I can think of!

By the way bertie I am hugely impressed with your calculations.

beandot, what a horrendous time you've had, really sorry for your losses. You'll find the women on this thread a fantastic support. It's such a wonderful group of people, just a shame we have to (virtually) meet in these circumstances.

Bertie, serious hat tip to you with those calculations. I love a bit of maths but my head would have exploded!

I'm CD20 today and have sore boobs and a fluttery tummy which is making me a HT but i know that it's really just the build up to AF arriving in a week or so. Every month i think that Mother Nature is a right cow making the symptoms so similar - i would prefer to pee green from day 20 or so if it was a go-er and red for no! No justice.....

beandot, welcome, I'm so sorry for what you've been through, and are indeed still going through. I opted for the surgical route with my mmc as it just seemed like the least traumatic - it was twins so we were told I'd have to have medical management in hospital due to the likelihood of heavy bleeding and complications. I just wasn't sure I could go through the horror of that. I too found the surgery quite stress-free and although it was the strangest feeling waking up without my babies yet still feeling very pregnant, I was then able to recover quickly. It really is such a personal decision though.

beanhunter, I agree with the positive hpt not being uncommon. Mine took more than 3 weeks to go negative after my mmc. Those levels really can hang around for such a long time - it is really is very unfair!

Wow Bertie! Also hat off to you!

swim, keeping everything crossed this is your month!

Thanks emvy

I've joined a facebook group about translocations... I am a little worried it's premature because of course everyone there knows what their translocation is. Well I'll see if they accept me. For now I am lurking. It's nice to have access to lots of information, not just snippets, like you seem to find on less specialised forums.