High risk for 2nd time

[babylily]

Hi,
I'm just devastated and don't know what to do. 4 years ago we had a nuchal of 3.5, high risk of 1:80, CVS, then termination of a baby boy with Downs. My bloods were perfectly normal (in fact they sent me a letter a week after my termination to tell me so)
Today, we have been given a nuchal of 3.2, and been booked in to see the consultant on wednesday. Combined with this, I am now 37 as I have a previous pregnancy with Downs I am high risk.
I just don't think I can go through CVS again, the risk of losing the baby, the wait for results, the absolute horror of being induced and delivering a tiny tiny baby.
I've spent the last 3 weeks in torture waiting to hear if the baby would survive to 12 weeks (I had emergency surgery to remove an ovary). We tried for 15 months to conceive and fertility clinic told us my husbands sperm count would make it almost impossible to conceive at all.
I can't think straight at all. Am i just seeing the short term, and being selfish about putting myself through the agony of diagnosis and termination? I don't know what to do at all, do I go through the next 6 months not knowing if the baby has Downs or not? And how do we live with ourselves choosing to terminate one pregnancy and not another.
I'm just so devastated, I don't know what to do. Has anyone ever been in this situation? Don't know how to cope.

Hoping that someone else will come along and post, but I do know of others who have had different chromosomal problems and had this worry. It is so awful when you have been through this once already .

Try to take a deep breath and look at the possible steps forwards.

Are you still waiting for the bloods? They might have an impact on the result you have today and give a more positive light - will you get the result on Weds? In the meantime, try calling the charity Antenatal Results and Choices, they have informed and supportive staff who are very helpful and might help you think through your next steps.

Other steps: are there stats for CVS at your own hospital/consultant? I think CVS stats can vary from one place to another; and also some babies lost to CVS might have been about to be lost anyway (ie CVS may not have been the deciding factor). Worth asking ARC about this as I'm not sure how you find out hospital stats.

Otherwise, if you definitely don't want to have CVS, could you have a more detailed scan in a couple of weeks looking out for other markers? I've heard of people doing this at the FMC in London (with Nicholiades, I think) - they look for markers like nasal bone being present and arteries/heart. It would mean you have to wait a week or two more, and isn't a diagnosis (ie not 100%), but may give the reassurance you need.

Really hoping that someone else is about who may have better advice... I'm so sorry that you have this worry again, particularly given everything else you've had to cope with .

Oh babylily - I'm so sorry to read your post. I really feel for you and I wish I could share some helpful experience.

Last summer, after a nuchal test and bad blood tests, we were given a 1:4 risk of Downs and the CVS confirmed it. We also decided to terminate. I'm now pregnant again (7 weeks) and so trying my best to think through some issues before getting to the scan and possible cvs again - and it's impossible. There just aren't any right answers.

I do agree with NumptyMum's suggestions. With CVS stats, I understand that you can ask at your hospital for the consultant's personal statistics. I did this last time and was told that his statistics (and the hospital's as a whole) were much lower than the 1-2% miscarriage rate quoted. I think a lot of it depends on how often they do them, and in our case they unfortunately perform a large number each week which at least means they're good at them. He also reminded me that chromosomal problems and heart defects (mine apparently at best had a minor heart problem, given the results) are more likely to result in miscarriage spontaneously, so the reported miscarriage rate after CVS may be overstated.

I'm also thinking of heading to the FMC in London for a more detailed nuchal scan with Dr N and his team before deciding about CVS. They look at a much wider range of markers and also do the blood tests at the same time so you can get a fairly quick answer on the risk based on a larger number of factors. If this takes you out of the high risk category then perhaps you'd be more inclined to wait for the later blood tests and scans before deciding whether a diagnostic test would be necessary?

I don't know yet how I'll deal with any of this, assuming I get that far, and whether I'll need to do a CVS for the same reasons as you mention- almost validation of the termination last time. But your situation is different now and so what's best for you and your husband might be different also. That doesn't mean you took the last decision lightly or incorrectly. This is an impossibly difficult situation and there are no right or wrong answers.

As Numpty suggests, ARC might be a good place for you to try to see if talking it through with someone might help you think about where to go next. There are many people on here who have been in very similar situations so if it helps to post more then please do. I only wish there was a magic solution I could offer. Thinking of you.

Just had call from hospital. It's worse than expected with my blood results.
We are 1:22 for edwards, 1:36 for Pataus, and 1:55 for Downs.
Going for CVS tomorrow as both Edwards and Pataus are usually fatal.
This is all just beyond my comprehension. How can this happen to us again?
I should be getting excited, getting to tell people about the baby and instead i'm preparing for losing yet another child. Its just so unjust.
this was our last chance at having another baby.

I am very sorry to hear this.

Nothing is definite yet. These are risk factors not a definite yes your baby has x, y or z.

Take small steps. Face each new thing as it comes.

But I feel your pain. After high risk pg I refused all testing with my subsequent pg as too scared of dealing wiht the results.

Oh babylily - hang on tight for the rollercoaster ride. Although those are scary odds, there are many, many women who have had much worse ones and it has been okay. Honestly. And because you have had a previous history, well that shifts the odds. It is all a game of numbers - and they just do not know.
You must be in agony, poor girl.
I have had two terminations for DS and I do know how desolate you must feel. ( my odds were very high; 1 in 2 and then 1 in 7. So you see yours do not look so bad).
I guess you will have to wait a few days to find out - be gentle on self. Post here, we will all hold your hand if it helps.
Have you someone there to help you?
Bee xxx

Babylily, I echo Bee. These are scary odds, but the 3.2 nuchal in itself really isnt that bad. Presumably the risk is calculated and skewed thanks to the previous DS pregnancy. So really the odds could be worse.

For what it's worth I do agree that CVS makes sense though. And I really hope the fact that the figures are overwhelmingly in your favour, even if they don't seem to be, means the results come back clear. The chances really are that they will.

I feel for you. I have terminated twice (for other chromosomal and developmental abnormalities) and I know the horror of facing it the second time. Please keep posting here and we will as Bee says hold your hand through it. Good luck.

Babylily - I'm sorry that the results have come back and are worrying you; but now you've taken the decision to have a cvs, that's the next thing to concentrate on. I hope it goes well and that you rest up afterwards - until then you still do not have a definite diagnosis; and as others have said it has been ok for others with worse odds. Really hoping it's the same for you too. xx

thankyou for your heartfelt replies, i'm so sorry to hear, bee and cantdothisagain that you have had to terminate twice. my nuchal on its own gave our downs risk as 1:8, but the bloods lowered the risk to 1:55/ god knows what the other 2 were before the bloods. Just feel so desolate. I just know the results will be Monday rather than friday, ( they have to be sent away and then take 3 woking days) and that i will end up having to be induced again. I can't picture a positive outcome. Ive even considered stopping taking the progesterone i have to take for losing the ovary, as without that i would probably miscarry wihin a few days.
It will be a long night. CVS is at 11 with same consultant as last time. I keep reliving the telephone call from last time, the woman asking me if I was alone, then telling me to sit down as they had bad news.
How do i find the strength to endure this wait again? I'm not a strong person emotionally and last time it was getting pregnant again that made me try and be okay again, but this time that can't happen.this is just hopeless. I'm just hopeless. I cant even speak to anyone, just cant do anything but cry. dont want to let my daughters out of my sight as i feel irrationally worried that somethings going to happen to them. think will keep them off school after tomorrow. is that wrong,
sorry to ramble. Just lost

Hi Babylily,

The wait is awful. Actually I've never had the wait as my babies both had fatal conditions and this was evident from scans alone, but I can imagine the wait is awful. At my hospital though, if you have CVS on Tuesday morning the results come through the next afternoon (ie Weds). Is that not the case with yours?

Maybe your DH/DP could take time off work to be with you?

You arent hopeless - it's really really hard. I found it harder to face the second time because I knew the horror from the first time. But I did get through. And you will, too. And you know, your baby could be absolutely fine.

Just do what you can to get through, take support wherever you can. Good luck. Let us know how tomorrow goes.

You are NOT just hopeless. You've received bad news after an already difficult pregnancy; and the sort of bad news that it is hard to share with anyone - and therefore you are struggling to deal with it yourself. It is a horrendous time, and the waiting and unknowns make it harder to deal with. You really need to cry, it's the only outlet you have for your grief and fears just now. And the irrational fears about other children - well, I'm pretty sure someone on the other thread (the support thread for termination) said something very similar recently about her own DD.

However, I think if your CVS is tomorrow then school may be the best place for your daughters, so that you don't have any extra stress on you afterwards - you need to rest. There is still a chance that this pregnancy is OK, and until you know otherwise, although it is hard, do try to believe that. Also is there anyone whom you can share this with in RL? Obviously I had my DH, but we were both floored when we had our diagnosis; in the end I did two things - rang ARC and also spoke to a woman at church who was really supportive, even when things turned out badly and we got confirmed diagnosis of patau's. It did help to have someone there to physically be with, hug, cry on... and that's hard to do with immediate family when you are trying to hide it from daughters or know your other half is in the same position. If you haven't got anyone in RL, do please continue posting here or - if it comes to it - on thread 5; Bee and Cant and others there will know something of what you feel and be around to hold your hand.

And as for picturing a positive outcome; well someone on here the other day had odds of 1:10 for downs and all was fine. So there IS a chance all is OK; and unless there is a genetic link (and obv you have daughters so I'm guessing that's proof there's not) there is no specific reason to think otherwise until you know. Yes, the outcome may not be good; but deal with it once you know the outcome. And when it comes to making choices - well there are so many factors, again, consider that when you need to. There is NO HURRY to do anything; I took 2 weeks because I wanted to wait for my full cvs results and had thought through everything thoroughly.

Sorry you are having to go through this and keeping everything crossed for you for a good result.

I really have not much to add to all the kind words and good advice already sent your way, just wanted to add positive story: I was given odds in their teens for Down/Patau/Edwards and went on to have normal CVS result and ultimately healthy DS. I was 42 at the time. Am now expecting DS4 and did not even want to know the odds, went straight for CVS as I have a genetic condition that makes my risk of Patau's 1:4. He is healthy too - due in 6 weeks.

It really helped me that the odds quoted are just that: odds. 1 in 10 risk means also 9 in 10 chance of healthy baby.

Very very best of luck. Be kind to yourself. Payers and best wishes being sent your way.

thanks. in tears again at your kindness.
My DH is here, but just lost himself at having to go through this again. he feels responsible too...it was his sperm count that stopped us conceiving, and fertility clinic told us it was unlikely we would conceive naturally due to those motility and morphology problems...the fact that we did conceive seemed like a miracle, but then that the baby isn't okay. I don't blame him, its more likely my age (37), but it's taken away all hope of ever having another baby.
I'm getting back in touch with arc tomorrow (in the summer I decided i didn't need them anymore.It seems like fate now.) I just keep reading things about edwards and patau and thinking about how happy i would be if the baby was downs as at least we'd get to keep it.
numptymum - did you have cvs to diagnose pataus? was it initially picked up at nuchal? I'm just desperate for information on experiences of this. Its supposed to be rare isnt it? It doesnt seem nearly rare enough.
Just dont want to talk to or see any of my friends in RL. I know no-one who has even had a remotely high risk in pregnancy. Everyone tried really hard last time, but i felt that i needed to pretend to move on, not be so absorbed in my own grief. Someone even said to me it was best not to wallow in it. I just keep thinking i need to be normal, I need to do school run, go to work, (move house in 3 weeks time), manage our lives, but i know i'm going to be completely incapable. I have to pack for our move. I have to pack all the baby things I'd thought we were going to use again.
will post again tomorrow. didnt sleep last night worrying if baby would have survived to scan. Ironic I guess if next week its all over anyway.

babylily, poor thing, you are so getting ahead of yourself!
You'll need all your strength, whether to face bad news or to deal with the anxiety an ongoing pregnany inevitebly will bring. Pace yourself, you do not have to be 'normal', this is not a situation most people have to deal with - ever - never mind repeatedly.

Good things can happen. Stop blaming your age, v young woman have babies with abnormalities and woman older than you have healthy babies.

Are you any good at distracting yourself?? Good book, trashy movie, shopping spree? Whatever works, IMO.

FWIW, I have had a total of 3x CVS and 1x amnio without any problems and healthy babies. I have also had 4 MCs, but have never had to make the heart rendering choice of terminating a much wanted pregnancy .

HOpe you get a good night's sleep.

Deep breaths required right now aren't they babylily? But you know what if your bloods have reduced your risk, this is very very good news indeed. You are in a better position than yesterday really. I think your odds are higher due to having already had an abnormality and the nuchal being highish but plenty of healthy babies have larger nuchals.
Is it a good hospital? Prof N will tell you that many nuchals are not measured acurately in many cases.
It is hard I know when you have had this trauma before because you automatically believe the worst. How could you not?
You have children already do you? Maybe try and be distracted by them if you can.
You will get through this.
Nobody has come on here and talked about a bad cvs - the cvs will be fine honey. No one is emotionally strong in this situation - you have suffered much.
Hold on tight.
Hugs to you and hubbie
xxxxxxx
Bee

Also honey - after my first DS pregnancy I felt all sorts of irrational fears about my children. I think this is normal. They are fine- but if it helps to keep them home for a special day then you know what? I think that is okay.
Just take one minute at a time - try not to let your imagination go into overdrive.
Try and rest
Bee xxxx

Good post, pacific. Our distraction was to watch comfort DVDs (ie well-loved films) and listen to Harry Potter audiobooks - it really helped me take my mind off things at least while we tried to sleep.

For myself, we weren't offered a nuchal (not routine in my hosp) so I found out at my booking scan at 13wks, and the developmental problems were obvious to the sonographers - cleft lip, brain hadn't separated in the way it should, plus bright and enlarged kidneys. All these were indicators of Patau's so we had the CVS to confirm, just so we could have as much information to give a likely prognosis of life or otherwise. I think it's pretty common for patau's babies to have this brain condition (holoprosencephaly), so if it wasn't mentioned to you perhaps that is a good sign. Of the three main 'trisomy's', I think Downs is the most common, then Edwards, then Pataus. And as with Downs, the 'severity' of the condition can vary with all of them; there are children that can live with Edwards or Patau's, but I don't think it is a long life . Hence our wish to get as much information as we could before making the decision. In fact, she died during this time, but if she hadn't we would have ended the pregnancy as we felt it was the best for her as well as us.

But you can't make any decision just now, not without knowing. So in a way, try to be normal as it helps you get through daily life - look after your daughters, do the school run, cook etc. Distract yourself, as Pacific suggests. Do the things you have to - and when you have your CVS tomorrow, find out exactly when you can expect to have a result so that you are not alone. We had our CVS on the Friday, so I got the results on the Monday afternoon - so I'm sure you should get the main results sooner than Monday. I really hope you get some sleep tonight; thoughts and prayers with you too. xx

Thinking of you and hoping your CVS went OK today...

Hi. CVS went okay. We had the same consultant as last time and she was wonderful. Wheras this morning i was unsure whether to have it done or not we felt it was the best and only option - the idea of waiting until 20 weeks for a scan diagnosis of pataus or edwards was just not a possibility. The consultants misscarriage rates after CVS are the same as for amnio, so we are reassured byt that also. The only thing was the possibility that i have been screened as high risk for patau and edwards based on the low PAAP (i think its called) result from my bloods...but they think it could have been affected by the loss of the corpus luteum and ovary, and the fact i am taking progesterone rather than making it myself. But it's such a rare thing to have happened there is no way of knowing.
May get the result thursday afternoon or friday morning (it has to be sent away to bristol), and they booked me a scan and appointment with the consultant for 16 weeks, which even as a gesture made me feel more positive that i would be able to have this baby. Hoping that everything is okay,obviously but will be content with a diagnosis of Down's.
will keep posting, thankyou again everyone for stopping me from feeling so alone. x

Glad to hear all went well today, babylily .
Fingers crossed you will get to hear what we all hope for this week. Would love to hear your result .

Take care.

Babylily - just seen your thread, I'm so sorry you're going through all this again, so awful and unimaginable. I was in a similar position with my terminated pg in that it was a"miracle baby" as was told 3 months before that I would never conceive. I haven't any words of wisdom just hang on in there and let the wonderful ladies here hold your hand and offer their shoulders. I can't really post just now as am abroad having egg donation IVF but your position sounded so similar to mine in terms of the infertility aspect so wanted to say something at least.

Will be thinking of you this afternoon (or if results come on Fri morn)...

Thinking of you, too. Hope you do not have to wait too long for result - and obviously hoping for a good outcome for baby and you.

I've been thinking about you ever since I read your thread earlier in the week. It must be awful to go through this again.

I really hope that you have good results.

Like Peanutpie - read this earlier this week and been thinking of you all week. Hope the results are with you soon...