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

[katiecubs]

Hi girls - i hope this becomes a useful area

Morning all. Just a quick post to add my fingers to the list of items to be crossed today while the scans are taking place. I've got a day full of evil things at work but I'll pop in to look for news when I can.

I'm feeling a bit overwhelmed with all of the news on here at the moment. The good news for Shangrila, Lins and baby Bella going home makes me cry on one thread, then the heart-wrenching stories of WaffyDaffy and babylily are making me cry on the others. Numpty - I've got my dating scan in two weeks then they've provisionally booked me in for a CVS in 5 weeks. Presumably there will be a nuchal scan in 4 weeks (although if I can't get it on NHS in my hospital then I'll just come up to FMC and do it). I'm swinging from positive to overwhelmingly hopeless a hundred times a day and just wishing I could fast forward the whole of the next six months....

Hoping that at least the next few hours passes quickly for Kittens and Allstars. xxx

Hi lovely ladies - just wondered if you might me able to give me a bit of advise. I hope you don't mind me asking all these questions. I had a termination for T18 two months ago, my DH and I had a long chat last night and decided that after my next AF we're going to start trying again. My husband has said we have to be very positive and hope that things are all ok this time (we already have one healthy little boy) but I am more nervous and need in my own mind to have some idea as to how things might be different this time round so I can try and prepare myself as to what to expect. So a couple of questions

• Do you know the earliest you can have a NT scan?

-Can you have the bloods done earlier than the scan and if so what's the earliest and will they give you an early indication as to whether everything is ok? -Is the Feotal Medicine centre the best place to go to for scans/ bloods, do you know if you can request Prof N to do the NT scan just because of previous history, so just for reassurance? -Do they factor in the fact that you've already had one chromosonal problem into your calculated risk or is it based wholly on the new pregnancy scan and blood results? -Were you automatically offered a CVS because of history? -Did you get offered / advised to have any additional scans, either before or after 12 weeks?

I'm really sorry for all the questions (i've just read all my questions again and know I sound like a complete nut case), just slightly gone into panic mode as to what to expect (and not even pregnant yet !!!) Thank you

HI HL

Congrats on taking the plunge. I hope everything works out better for you this time. I'll try and answer some of your questions:

Earliest I believe for NT scan is 11 weeks. Which I think is the same for a CVS. I believe that NHS trusts are all different but I think the norm is that if you've had previous chromosomal issues, you're entitled to an NT and CVS free of charge on the NHS.

I know that if you've had previous trisomy issues, it affects your risks, combined with your age. However, I'm unsure if they factor the previous problems in once you've had the NT scan. Can'tdo did suggest to me once, to get the bloods done before the scan, so that you can get the final risk on the same day. As I think the NHS make you wait.

I had my CVS done privately and they do everything together, and give you the result straight after the scan.

The FMC has a pretty good site, you should check it out, it has prices / dates etc in it.

Good luck

BK x

whoops, sorry didn't realise I'd posted on the 'pregnant' thread.

Apologies x

Ops, sorry have I also posted on the wrong thread? Wasn't sure where to post but thought this the best place as you ladies would have gone through all this being pregnant again. Apologies if this wasn't best place to post.

Hey Helenlouisey,

Good luck with your TTC journey! You are right it is very nerve racking but as your husband says its good to think positive as the chances or reoccurrence really are very low. I had a termination for Turners Syndrome in September (my first pg) and am now just over 12 weeks pregnant again ? I had my scan last week and luckily everything looked just fine, it was a huge relief as I was incredibly nervous

In answer to some of your questions the earliest you can have your NT scan is 11 weeks. In my scan they combined the NT with bloods to give me risk numbers but not too sure if you can have the bloods done earlier on their own.

I was offered a CVS right away if I wanted but I decided against this if my risk numbers were low as I didn?t want to risk a miscarriage. Luckily my numbers were very low ranging from 1:12,000 ? 1:125,000 for the various trisomies so I didn?t go down that path but it was definitely an option if I wanted.

I was told by my doctor I would get an earlier scan this time around but the hospital weren?t very helpful with that. In the end I went to the EPU and demanded one at 7.5 weeks, it obviously couldn?t rule out chromosomal problems but it was very reassuring for me to see the baby alive and well as to be honest I was so nervous of anything at all going wrong this time around.

I can?t advise on the FMC as I have not been (my hospital do NT and bloods as standard) but I have heard it is the best and Prof N is a world expert ? perhaps give them a call and see if you can request him specifically. Finally I?m not sure if they factor in a previous chromosomal problem into your risk numbers ? I?m assuming not as it was not mentioned to me correct me on this if i am wrong anyone!

Anyway best of luck and I hope to see you back here again soon xxx

Hello HelenLouisey,

I'm also slightly pregnant after a termination for T21 last summer and I had (/have) all of the same questions as you. I agree with the others that there are some variations depending on which NHS Trust you are with, but here is what I know:

You can have the NT scan from 11 weeks to 13 and 5 days. I had my blood tests a week before last time (so assume the same again this time) - they did not give me the blood result until I had my NT scan, but this was added straight in to give a combined score. I've heard great things about Prof N and the FMC so am fully intending to go there for a second NT scan if I don't get such good odds from the first as katie got! The fact that you've already had a chromosomal problem is factored into your 'baseline risk'. So my odds for another T21 are currently 1/100. But when you have the scan/bloods, they calculate a new, independent risk based on the results. I have been automatically booked in for a CVS dead on when I think I will be 12 weeks but I've yet to decide what odds I will need to see before I decide whether or not to go through with it. And I was also promised an early dating scan (around 8 weeks) to ensure that the NT and CVS could be done as early as possible. But like Katie's, my hospital were not very helpful at first. After crying all over my GP last weeek, I did get offered the scan which is now going to be at 9 weeks (because I couldn't make the date they offered at 8).

Hope that helps arm you with some more information? Based on my experience this time round, I'd advise you go to your GP as soon as you find out you are pregnant and then be as pushy as you need to be with your hospital to get the early dating scan. Once I was properly in the system, everything else has been much more straightforward.

And best of luck with the TTC! I recommend ovulation sticks. But then I do like peeing on a stick. But seriously, after trying for about 5 months, it worked first time I used the sticks as a guide.

Hi ladies

I've been meaning to say hello on this thread for ages (am a very sporadic poster on the original thread), but am finally posting now in case I can help answer some of HelenLouisey's questions. I'm currently 24 weeks pregnant, after a termination of our first pregnancy for T21 and heart problems, followed by an early miscarriage, both of which happened last year. All looks to be ok so far this time round, thankfully.

I chose not to have a CVS this time, as my risk level at the NT scan was pretty low (about 1 in 2500 for T21, about 1 in 12,000 for the other trisomies). My understanding though is that previous chromosomal abnormalities are taken into account when calculating the risk level. My original base level (before NT and bloods) for the first pregnancy last year was about 1 in 400 for T21, based on me being 33 at the time. Six months later, this had gone as high as 1 in 112, due to the previous diagnosis.

Depending on which hospital you are at, they can do the bloods and NT scan at the same time. I'm at Kings in London, which has been fantastic. They took blood samples before the scan, we had the NT scan come back as ok, and about an hour later (they sent us out for a coffee) they had the blood results back and could give us the combined risk number. All the Kings people are trained by Prof. N, which gave me huge reassurance.

Another thing that Kings were amazing at this time - and I'm sure that it was specific to this hospital - is that I had an early scan at 9.5 weeks as part of a study they are running looking into the reliability of early scans as indicators of healthy pregnancies etc. As part of this scan, they actually measured the nuchal fold and told us off the record that it looked fine. While they couldn't say anything officially (the study is still running), it was a huge thing to have even an unofficial indicator that things might be ok. I'm just mentioning this in the unlikely event that you, or anyone else, is at Kings and could request something similar. I was asked to participate in the study after having some even earlier scans for this pregnancy (long story, but there was a risk that my previous miscarriage had been ectopic, so I had to go in as soon as I found out I was pregnant again).

In terms of other scans, I haven't been offered anything additional as the nuchal scan this time was low risk. But they did spend a very, very, long time on the NT scan, much longer than for most people, and included an internal as well as an external scan for added clarity. We paid for a private "reassurance" scan at 16 weeks, as I was still finding it very difficult to tell anyone our news after what had happened last time. Our "regular" 20 week was again particularly thorough, so I'm as reassured as I can be that everything is ok. A combination of the good 20 week scan, plus feeling regular kicks from the baby, have really helped me to start to relax about things in recent weeks, although there's still a long way to go.

I'm not very good at regular posting but do lurk a lot, so if I can ever help anyone with any questions then I'd be delighted - I have gained so much support from these threads over the last nine or so months.

Kate xx

PS Sorry - took so long writing this that lots of other people have answered in the meantime! K x

Hi Kate - nice to see you drop by, 24 weeks now wow! Was really interested to read about the study you took part in, its great to know they are looking into earlier testing.

Where did you have your private reassurance scan done by the way? Am also struggling to tell people and was thinking of booking one of these. The gap between 12 and 20 is pretty long!

Katie xx

Katerina - really glad to hear that things are going well.

And still thinking of Allstars and Kittens, who have their scans today...

HL, re what to expect, I just rang the sonographer at our FMC when I fell pregnant again, partly because the line was faint at first and I thought I might be due another miscarriage (she told me to try again in a week, and it WAS stronger). At that point she booked me in for a scan around 8wks; that may have been because of my age though - with each pregnancy I've had a scan at 8wks because I think they are routine for women over 37. In the meantime I had bleeding so had ANOTHER scan (dreaded it as thought all was over, but it wasn't). Because of the bleeding I was advised not to have CVS; we had a nuchal/CUB scan and got our results a couple of days later and the risk was low enough not to warrant a diagnostic scan. I was booked in for a consultant scan at 14wks - not sure if this is routine or not - and another one at 18wks, but I'm not having a 20wk scan. I've had enough scans now for one pregnancy!!

So - I guess it depends on your area. With us, TTC was something they would have discussed at our 6wk appointment (except we'd already covered it by then).

Do try to remember, with T13 and T18 in particular it is very rare for there to be a genetic link (only in cases of mosaicism which is a less serious version of the condition, I think). So although your 'baseline risk' has increased, I don't think there is an increased likelihood in reality. However it does mean you should get extra support with any following pregnacy, which I found very reassuring. Hope it goes well for you... I'd recommend the ovulation sticks too as I was TTC for months and months, they might have helped!

DOH - meant diagnostic test, like amnio - not scan. Was previewing and hit the 'post' button by mistake! and re TTC the 'months and months' was between DS and our baby lost last July; afterwards only took a couple of months to conceive again (didn't want to wait too long as I don't have time on my side...).

Hi Katie and NumptyMum!

It is so good to know about these research studies - hopefully it will help lots of people in the future. We had no idea they were going to look at the nuchal fold and I was a complete wreck once the doctor mentioned it - I couldn't even look at the screen while it was happening.

We had the private scan done at a clinic in Docklands called My Ultra Baby. This was basically the least expensive (I think around £65?) one I could find that was vaguely convenient for us - there are obviously lots of very good clinics in central London, but most were charging upwards of £150 for a more detailed scan, and all I really needed at this stage was the reassurance of seeing that the baby was still alive and growing ok. I know exactly what you mean about the gap from 12 to 20 weeks seeming so long - the 12 week scan was actually the 5th I'd had between 4-12 weeks, and it was really scary to think about going a whole 8 weeks without one.

I was so pleased to see your 12 week scan went well, and will be keeping everything crossed for similarly good news for everyone else.

K x

Katie - just had a thought, in case it helps - last time I was pregnant, my midwife was very amenable to using her little mini device (doppler? sorry - never asked her what it was) to listen for the baby's heartbeat, which I found very reassuring at 9 weeks before I had been for a scan. Not that it mattered in the end, but for a short while I was very reassured. Might be another option to consider between scans? x

Thanks Katerina i will check that place out!

Littlepoot, i have a doppler already actually - you are right it is very reassuring and i used it just today! Am also paranoid about growth/development too though which i guess it can't help with - what i really need is that magic crystal ball

Thinking of Kittens and Allstar xxx

Hi ladies. Thank you all so much for all our support over the past weeks and thoughts for me today.

Sadly the news was not good. This little one was not to be. There had been no development since the last scan and the yolk sac has now gone. I don't know if it's because it hasn't sunk in properly yet, whether I've had a couple of weeks to consider the possibility of this outcome or the fact that the pregnancy really hadn't even had the chance to get off the ground but at the moment I am feeling sad and angry but not quite as hard hit as in previous losses. I just wish that nature had helped me in the most ideal way, ie. by letting my loss happen at 5 weeks when the pregnancy stopped developing, which would have been a week or so after my period was due instead of letting me have a month of hopes and speculation. As it has already been 5 weeks since I should have naturally miscarried I've decided to have an ERPC which I will be going in for tomorrow.

In the meantime you will find me quietly curled up on the sofa with my boyfriend, my cat and a beer.

F* it all!

Kittens, I am so sorry. You've gone through so much, it isn't fair.

Good luck tomorrow. And things that helped me with loss were comfort novels, hot baths, wine and chocolate. Oh and runny stinky cheese.

Take care of yourself.

Kittens - am sending you hugs and warmth and compassion and understanding. You do not deserve this loss and sadness. You are right to be angry. I felt the same way about my miscarriage after my two terminations too. At first sad and angry - angry is good. It is strengthening. I hope they are kind to you honey; I hope they look after you as you deserve to be looked after.
Big f**k it from me too and a large glass of wine
Bee xxxxx

Kittens i'm just devastated to hear your news - i was right behind you hoping for a positive outcome.

I don't know what i can say to help you in any way. It just sucks big time that you have to go through this all again.

Thinking of you and your boyfriend, i hope tomorrow is as easy on you as it possibly can be xxx

Kittens -
I am so sorry to hear this; sad and angry sounds right. Thinking of you, and I hope tomorrow is... well, OK as it can be, I suppose.
xxx

Kittens, I'm so so sorry to hear your news. No wise words to offer, but I'll be thinking of you tomorrow. I hope all goes smoothly and that the staff are kind. Much love. xxx

Thank you all. I have to get up at stupid o'clock tomorrow and be there for 7am but at least I can get it over with.

Will pop my head in from time to time to see how you're all doing but might hide out for a little bit.

I wish you all the best with all your pregnancies. I hope good fortune shines on you all.

xxx

Oh love, I hope better fortune shines on you as well... xx

Oh Kittens, I am so so sorry. Life is really unfair and I am all cross on your behalf. I'll be thinking of you tomorrow. Take care of yourself and hope life treats you gently for a while. Sending you lots of love. xxxxxxxxx

Kittens, I am so sorry to hear this news. You and Allstars have very much been in my thoughts, and like everyone here, I came on hoping to hear that all was well. You have been so supportive and generous to all here, you deserve your own happiness. Please do drop by when you feel you can. Love, hugs and a big F* it too from Oz.
Take care of yourself xxxx