Support thread for women who are pregnant or TTC after a termination for abnormalities 3

[LittlePoot]

So, New Year, New Thread. And the next set of New Babies are arriving! I hope they prove that there can be light at the end of the very dark tunnel we have all had to come through and I hope there are many more babies to come. In the meantime, we're here, as ever, with supportive words, virtual hands to hold and multiple fingers to cross to help everyone through these nerve wracking waits and scans. A more lovely group of ladies you could not wish to find. xxx

Whoops... I meant !

Hi Crazycatlady, so sorry to hear you have had things stolen. that must be a horrible feeling not knowing how they got in. But glad Lawrence is now feeding well and you are all ok.

Natz, what fantastic results. i thought the first ones you quoted were good but the second lot were really good. Sounds like kings were just doing something for their own benefit.

Babylily, all sounds well with you also. Also pretty envious of those muscles. i don't think I have any left at all.

I had my booking in last week and wasn't left feeling particularly happy. For my age my odds for an anomoly are 1:175 and with my history it comes down to 1:104. The mw kept referring to my previous termination as a stillbirth, I had to keep correcting her and i'm still left feeling judged and like she hasn't fully understood. She wasn't very sympathetic and was surprised about it every time I said it.

i'm not sure I'd have got pregnant again if I had realised the odds for my age but perhaps I'm reading too much into it and should wait for my nuchal which is in about 3 weeks. i'm not that down but I didn't leave feeling supported.

Told my mum I'm pregnant. She's happy to tell my dad later. She said he'd get used to it which I expect he will. Apparently she's suspected I'm pg as I've been really grumpy (!) and stressed though I don't think i'm that bad. keeps asking if I'm ok though which is a bit annoying.

actually to be fair the midwife stressed that I need my nuchal early and made sure that happened. Perhaps I'm just judging her for being professional and wanting her to be a bit more friendly when she's just doing her job. It all depends on your own state of mind doesn't it?

Hi Manitz, I dont think you are wrong to want her to be a bit more friendly, after all pregnancy is one of the most vulnerable time for a woman, especially women who have had to go through what we all have. Try not to stress too much about the odds they have given you. The odds I had for T21 before the blood results with my age and history were 1 in 630, which then jumped to 1 in 9016 after the blood results and again for T13 & T18 were 1 in 1226, which then jumped to 1 in 18604, so on history alone it is bound to be higher

Im glad they are doing the NT scan as early as they can, the wait for ours has was hellish and I was just plain evil to DP for the 3 days running up to it. Spent yesterday morning before the scan throwing up from nerves. Where are you going for your scan? If at all possible could you go to Kings? I only say that because they dont let you leave without the blood results, they took us in for our bloods almost immediately then did other research stuff then had the scan and were only waiting 5 mins after the scan for our blood results. I dont think I would have been very nice having to come home and wait a few days for the bloods to come back.

I imagine the reason the midwife referred to the terminations as stillbirths is because she was either just looking at the GA or trying to be sensative towards your history. Either way, it doesn't help when your past isn't properly recognised, especially since it is one of the hardest things to decide to do, and there is a very long emotional recovery period. Not saying that a miscarriage isn't equally painful to recover from, but there isn't the weight of having to make that decisions to carry too.

We were very lucky with our booking in midwife, I wanted to hug her at the end, but thought maybe I shouldn't in case I burst into tears.

Hopefully your dad will surprise you. Take care and let us know when the scan is due, will sit out the wait with you xx

Manitz, I suppose it's best to try not to fix on the age related odds as at the end of the day they dont really mean that much. And wait and see what the nuchal and bloods say. Hopefully you'll be very happily surprised. Its a shame you didnt feel more supported by your mw though so you could have had a chat with her about how you felt and perhaps got some more reassurance or at least felt you could talk about your fears a bit more. Hope your mum is a good support to you now she knows. I still haven't told my mum but we aren't close and I suspect she'd just tell me I should have waited longer anyway if I do tell her. I wish my dad were still here as he'd have been a great support but such is life.

Natz - what fantastic odds, first major hurdle over, you must be so relieved and reassured. That's excellent that you got all results in one day. I can't imagine that will happen for me. They don't even do nuchal testing here on NHS (I'll get one just because of my history) so I suspect I'll need to wait an agonising few days to get the results. I do need to check it all out though, I haven't called anyone yet to say I'm pregnant and should because I have questions to ask. But I'm just burying my head at the moment as I think if I speak to anyone about it I'll just burst into tears. Can't work out if that's due to hormones or fear.

Catlady - so sorry you were burgled and such precious items were taken. It's such a violation, I hope that you are not too shaken by it. Glad feeding is going well now and you dont have to express so much, hope your supply adjusts soon enough - you could always donate the excess to that breastmilk ice cream place in London

Babylily - glad to hear you've been reassured by the consultant and are being well looked after. It certainly helps to feel people understand and want to support you as well as they can.

Hope all the new mums and babies are doing well. Poot - how are things going for you now?

hi the termination she referred to as a stillbirth was my first one which was past 24 weeks so I got a stillbirth certificate. I think it must be that all late terminations are recorded as stillbirths for that reason. However as soon as she called it that i had to correct her and she had difficulty understanding what I meant so I had to spell it out IE I had an induced birth and the baby was injected prior to that birth. Most importantly I needed her to understand WHY this had been necessary so she could understand that it increased my risk of a baby with a heart problem. ds was there but I consider him too young to understand (though who knows) but could have done with a quickish apptment as he has limited attention span.

It's fine she didn't know at first but then repeated my pg history and again ref'd that one as a stillbirth. i didn't understand whether she had missed the whole point or not as I'd been quite graphic and refered to it myself as a termination, I would expect her to take her cue from me. So i corrected her again, and again.

anyway, can't really get to kings and have found it makes things more complex to go out of my PCT but am happy to have nuchal here and wait my time - thanks for the info though. Am having nuchal at dot on 12 weeks and mw was great in the end just prob a communication/terminology issue plus me being stressed at having to deal with ds at same time.

Natz sorry you were so stressed at yours but for nothing luckily. x

thanks for reassurance both of you on the change from age-related odds when nuchal done. Just a bit of a leap as was 29 during first pg and odds were so great for my age. Now would encourage anyone to be a bit younger if they are in a settled relationship and know they'll have kids at some point not to hold out. Poor male colleague next to me got a bit of earache for saying him and his dw will wait a bit nag nag, but you know your odds will go up massively, look at mine etc etc. think he might be waiting for my redundancy to come as much as i am so he doesn't have to deal with the hormones!

manitz, sorry you had such a struggle getting your mw to understand - I've found that they seem to just scan read things (I did have one of the midwives at at early scan ask if my termination a year ago was just 'not right time'...she was incredibly apologetic when i pointed out that further up the page it explained that it was for T18)
Re; The risk factors - I was told by genetics that 1:50 was our risk factor of a future chromosome abnormality based on 2 previous trisomies (and my age, 38, would probably only increase that risk) ,hence recommendations to go straight for CVS at 11 weeks and not bother with nuchal at all. Having gone onto get a risk of 1:20000 for T18 & 1:4000 for T21 based on bloods and nuchal (a remarkable result for my age apparently, never mind history)I would say not to worry about any risk calculations given that aren't based on real analysis..e.g. scan and bloods. We can't all be assessed on averages. My results are total testimony to that. I am going to encourage my daughters to have babies in close succession between the ages of 28 & 32...I had always planned on having my last child in my late 30's...and considering the trauma to get here it feels a little foolish to have presumed everything would just always be okay.
Hope the wait goes quickly until the nuchal..Will be thinking of you.

xx

Sorry Manitz, sounds like your midwife really wasn't tuned in. There is a huge difference between a still birth and a termination, as you say, the risk of heart defects being the reason for the termination and hence the risk of future heart problems.

I am the same with my friends who are same age as me, everyone turning or just turned 30 and still putting off kids. I try not to be doom and gloom but they just dont accept that it could happen to them, they keep saying over 35 is high risk. Quite annoying that they dont seem to recognise that at 29 I was not in the high risk bracket, yet still had that terrible outcome.

Babylily, I had a very similar experience with my practice nurse shortly after my termination. I went to see her as was bleeding quite a lot for a few weeks. She skimmed my notes and told me that many women find themselves in my position, not wanting another baby and chose to terminate so I shouldn't feel guilty about that. I pointed out that the termination was our only real choice and that we had actually very much wanted our baby. She looked horrified then looked at my notes again on the screen - which was visable to me and stated in glaringly obvious bold text that the termination was due to HLHS and Turners syndrome. She was also very apologetic, but by then the damage was done and I was close to tears.

I understand that health professionals are busy and have a quick turn over in seeing patients, but they really should read their notes properly before making such flippant remarks and asking inappropriate questions.

We have finally started to tell people our news, some close friends have been wonderful and got very excited for us. Im not sure why but it feels like the wrong reacion. Although we have been given such fantastic results from the scan, I am still so worried they have read it all wrong. Nobody has acted worried, which is the right reaction as we have been given the ok, but I just dont feel so optimistic and I suppose expect everyone to feel the same as me. Still many frinds and family to tell, so who knows, maybe one of them will sit and worry with me - neurotic!!!!

Hi everyone, so much news to catch up on! First though a big congratulations to Drama and a lovely named-little girl (and quite big, too - well done on fab birth).

Manitz, your booking-in experience chimed with me, although mine went differently. I saw a midwife I'd never seen before and she was quite cold - expressed no sympathy for my 2 losses, was very matter of fact about me being uber high risk, and just didn't seem to say anything I expected her to, nothing reassuring, etc. I came out of it feeling sick to my stomach. I saw her again, much later in the pregnancy, and she was warm and nice. It occurred to me that I was so anxious going into booking-in that however she had been it would have felt wrong to me. And where the hospital midwives I saw were all from foetal medicine and very versed in high risk, she seemed to find it awkward initially. Had she been reassuring, I would have thought she was dismissing my anxieties; had she placed more emphasis on my risks, I would have thought she was being over-negative; think she couldn't win, and booking-in was always going to be awful. It gets easier as you go along but I always felt people were saying things wrong, somehow. Good luck with the nuchal. FWIW, the hospital people were brilliant at saying the right thing to me. And I echo the others on the pointlessness of dwelling on background risk for now.

Natz, great nuchal/blood results. Know what you mean about people's reactions - again though think people can't win - my brother and SIL acted as though every scan was going to bring me disaster, and I KNOW it was because they weren't dismissing my anxiety, but I felt as though they thought it was all jinxed and that didn't help either.

Sunshine and Belinda, welcome. Belinda, good luck with the TTC and Sunshine good luck with the nuchal.

Bluecat, with you on the stats thing - last time around got a nuchal/bloods DS risk of 1:37000, nearly, and still thought, oh well, I've already been a 1 in 2000 and a 1 in 5000, and the chances of being that one twice were pretty much teeny, and so 1: 37000 is pretty unlikely, but someone has to be it. But I didn't have invasive testing cos my thinking was that anything fatal would show up on the frequent ultrasounds.

How are all the newish mothers? Coffee, Gina, Rachel, Poot? any updates on the lovely babies? Catlady, horrible about the burglary, but you sound so positive about everything anyway. Good news about the tongue tie snip. How is DD taking having a baby brother?

And hi to Mishtabel and Numpty and Katie. Babycant is such a human dustbin. She will literally eat anything. Shame her big sister is so fussy. And Babycant will be one in a few weeks.... time flies....

Special shout-out to Mimsy - hope things are going better - and to Kittens - good luck with the waiting to TTC and hope you get a good plan in place for a late 2011/early 2012 bambino.
What an epic. Off to rest. Sorry for not posting more. I think of you all and lurk often.

Ladies just wanted to say how happy I am to read about the recent nuchal scans. Some really great results and must be somewhat of a relief (although I know we will never fully stop worrying until little bubbs are in our arms). I have my nuchal in 12 days time. Am trying to put it to the back of my mind but can't help thinking about it every.......5 minutes......!!

Hi to everyone

Manitz - like everyone else, sorry the midwife wasn't more understanding. I've had hugely varying experiences with midwives, some are great, some totally clueless. Yours sounds a bit near the clueless end. Even if they don't have time to read notes, you'd think when someone tells them something so important, they'd listen. But at least she has booked the nuchal for early, less time to wait.

Natz, what brilliant test results. Congratulations - what a relief for you. And fingers crossed for Sunshine that yours are as reassuring.

I finally got my blood test results yesterday 10 days after the scan (screening person off sick which delayed things, very frustrating). I wish I had news like Natz and Babylily in the thousands, but my downs risk has come back at 1 in 580. They don't give numbers for Edwards/Pataus, but apparently I am "low risk" for those which could mean anything.

When I got the result I felt a bit sick - the downs risk is very similar to the downs result I had last time, when my baby had edwards. But this time the hormones do look a lot better than they did then:
Nuchal: 2.2mm
Hcg: 0.97 MoM
Papp-a: 0.54 MoM

So basically the papp-a is a bit low (within "normal range" though apparently) which I guess is why I haven't got brilliant results. I know 1 in 580 is not high risk (my age risk is 1 in 320 so it is an improvement), but can't help wishing the odds were better.

Sorry for all the detail. Hope all the new babies are doing well x

grandj, really sorry you didn't get better odds...I know that you know this, but they really are very good results...low risk is low risk (and when they get into the 1 in thousands what does it really mean tbh)
What are you going to do from here? Will you be able to get another scan to have a good look at the soft marker bits - and perhaps put your mind at rest? Pregnancy after such a tragic loss is just so stressful anyway, you need to do whatever you can to make it as easy on yourself as you can (believe me - having gone from elation to complete pessimism every other day I know what I'm talking about!)

take care xx

Thanks babylily. And I do know with my head that they are good results. It's just hard not to be terrified, as I know you and everyone else will understand. And probably even if they were miles better I would find something else to worry about!

Not sure what the next steps are really. I haven't seen a consultant (which is a bit rubbish considering 2 terminations for abnormalities) but I will ask the midwife if there is any chance of an extra scan at 16 weeks. If they say no then I might go for a private one. Not really sure yet. Wish things were easier but I know they never would be after going through what we've been through.

Grandj, they may not be amazing odds but they are still pretty good, it is such a worry no matter what the odds are, especially with history. I hope the midwives are able to offer you a scan to give you a better picture of what to expect. Would you have a CVS or Amnio?

I think with your past, requesting an additional scan is completely reasonable, I would be surprised if they refuse. I agree that it is rubbish no consultant has been involved with your care.

Wish you lots of luck, let us know what the midwife says.

Im still worrying and trying to convince myself that everything is ok, but there's that little voice in my head that always ends that sentance with 'for now'. I hadn't realised my DP had told our neighbours that we were expecting again, and it threw me a bit when one of them came up to me to congratulate me. He and his wife were lovely at the time we lost Cara, and I know they have been waiting for announcement for a while. Just all seeming very real now. Although I still havent told most of my friends and there are still some family that dont know. To be honest, I sort of feel like Im losing control of the pregnancy now that people are finding out. Nobody knowing gave me a sense of control over the fear. And if it got too much I could just pretend I wasn't pregnant. Now people are asking how I am and when the next scan is, are we going to find out the sex etc, and it all feels too personal. I never felt like this when I was carrying my daughters and it is all becoming slightly overwhelming.

Sorry for rambling. Having one of those days!

Sunshine good luck with your scan, and Cant, it's lovely to hear from you. Hope all the new mummies and babies are well. Hello to everyone else xx

Hi all!
Off to bed in a mo but thought i'd let you know i've put up some pictures of Isabella for those who would like a peek.
xxx

Drama, she's so cute and chubby!

Grandj, I agree with Natz that it's ridiculous you haven't seen a consultant. I had a foetal medicine consultant do my nuchal scan and was seen in foetal medicine throughout my pregnancy after the 2 terminations for abnormalities. I suggest you ask to be referred to a consultant asap (you could always transfer back to midwife-led after the anomaly scan, as Numpty did). As for the odds... well, I've said my miserable piece on odds before (ie they could sound amazing and you could still be the one) but for you, your history will have been factored into the calculation, so actually the odds are better than they sound. And presumably you are deemed low-risk on those odds and not being offered invasive testing (though I had very very low odds and was still offered cvs as an automatic consequence of past history, as they said that it's all about how you feel about the pregnancy, not about their arbitrary limits of what is or is not high risk, and women with previous history of abnormalities often feel less comfortable with even quite low risk results). If you can't get the hospital to scan you at 16 weeks, definitely go private and then you'll be better placed to decide to go for or reject amnio. FWIW, I am sure your baby is fine. But you need peace of mind so you need another scan.

Natz, I found it disconcerting how people knowing sort of took over the pregnancy for me initially. And the stupid questions about would I rather have a boy or a girl.... (answer: I want a healthy baby). But oddly as time passed, I found their confidence more reassuring, and it began to seep into me more, and I began to feel more like a normal pregnant person. If that makes sense.

Sunshine, good luck with the nuchal! Waiting is worst of all, I think.

Hi Grandj, really sorry you didn't have better results. i know they are good and really low risk but like you I'd be happier if I can make it to the thousands. With DS i was offered a cardiac scan at either 16 or 17 weeks and even with the last pregnancy when I was definitely going for CVS they were offering me a specialist scan and that was at 13 weeks so it is definitely possible, try speaking directly to consultant's secretary as i think they often have a bit more power to book you in quick. However as others have said it's more likely to be fine than not.

Dramamama, isabella looks lovely and ds too! hope you are enjoying yourselves.

Oh Drama, she's gorgeous! . I'll bet you are relishing those cuddles, even if you get the sleepless nights too. Big bro looks very proud! Lovely family.

Sorry not read all posts, and am on borrowed time while I watch diggers on youtube with DS (!), but Natz, can totally relate to what you say about being in control while people don't know about your pregnancy. I didn't tell anyone until after my 18week scan, I think - and panicked when my boss guessed early on (I lied outright! but she forgave me). But it will be just for a few weeks, if you can ride those out; I found after I was 18wks/last scan I'd got so used to NOT telling people that it was actually harder to do so then. Anyway, good luck.

Grandj, I hope you manage to get an earlier scan, I did find it reassuring to get more scans so that (god forbid) if something came up, we'd have more time to figure out what we'd do. Really hope you get a sympathetic response from your midwife/antenatal team.

Better run, not sure what I've got DS watching. Demolition of buildings with grabby cranes at the moment...

Oh - and Catlady, I'm so sorry to hear about your burglary; it's the un-nerving thought of someone being in your house that we usually regard as our safe space, I hope you can get that sense of a safe space back again soon. And enjoy more cuddles with your wee DS! (and DD of course).

Thanks so much to all for the replies. Have only told one person in real life apart from DH so it's good to be able to chat here. I will ask for a scan, and to see a consultant - they are treating me as a "low risk" pregnancy as my 2 abnormalities were unrelated and in their view, just chance, but hopefully with a bit of persuasion they will be a bit more helpful. It amazes me how the level of care fluctuates so much from hospital to hospital.

Natz, I totally understand by the way about the telling people thing. I am out tonight with a friend who is going to think it's weird if I don't have a single glass of wine, and i feel a bit self conscious that I am showing a bit now anyway. But I don't want to tell her either as I'm not sure I can really deal with the congratulations and then long analysis of how I must be terrified. Although she is a bit of a pessimistic person so that doesn't help either! I guess at some point we will have to reveal it, and I'm kind of thinking I might tell everyone on email. In a way I think it will be easier to deal with an electronic rather than a real-life response/conversation.

hi grandj, i think you also have to take responsibility for your care as you can get lost in the system and processes. use tears ( as a last resort, think it sounds better to be reasonable and in control), mention anxiety, panic attacks etc - firm pressure helps. with dd3 I was told it would be a week wait to find out what the heart problems were so i asked for a generic referral letter which my consultant gave me and i called every hospital in london until I got an earlier appointment. with ds2 i didn't understand what the cystic hygroma meant and was going mad at home so i just turned up at the hospital and luckily caught the consultant and he explained.

Personally i would stress the fact that it has happened before, you are understandably worried that the numbers are similar and you want to be reassured or (god forbid something is wrong) to take action as early as possible or you fear for how you will cope.

i'm really surprised they think you are low-risk. i'm considered high risk and I have two unrelated abnormalities. Even with just the heart problem I've been pandered to pretty much with all my concerns. would you have a spritzer? or have tonic and pretend it has gin in? i've ended up telling loads of people now! i don't really do secrets.

Quick post - Grandj, here you are high risk after just one trisomy pregnancy, never mind two, even if unrelated. Please do ask for advice. Having had a baby with Edwards, you should be allowed to ask for a CVS even with odds below their usual threshold. I know you don't want one, but asking about it should get you to see a consultant who can talk through the results and give you an extra scan to check organs etc in a couple of weeks. Alternatively maybe see if you can get hold of the screening coordinator at the hospital who should also be able to refer you.
Good luck!

Very quick post to say I decided yesterday that being patient until 20 weeks just wasn't me, so paid to have a babybond gender scan today...and it was worth every penny. The sonographer was able to show us everything we needed to see to be reassured (all looks normal) right down to the kidneys and bladder, the 10 fingers and toes. I know it's not as detailed as the anomaly scan, but during the 20 minutes we were in there she identified as much as she could at our stage. Having seen at 12 weeks as well that the heart, stomach and brain were all as they should I feel hugely relieved.

Completely stunned as well to discover that we need to start thinking about boys names!
xx

Babylily - that is amazing news. congratulations to you. So reassuring and worth every penny for the peace of mind I would say. And not long to the 20 week scan now either. So great.

Thanks to everyone for the advice and virtual kick up the a**e. I know I need to take responsibility for my care - I was thinking this morning that it's only 4 months since we lost James, and part of my whole head-in-the sand attitude to this pregnancy is because I have nowhere near got over that yet so it's hard to muster the strength to chase the hospital etc. But I know I need to get a grip.

Anyway, spoke to the screening co-ordinator, she is going to organise a 16 week scan. Not hard to get done at all! Thanks to all x