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anxious about cvs - v complicated and long but pls read before chiming in

(29 Posts)
flappybitsoskin Sun 24-May-09 21:46:24

I carry fatal genetic disorder. Prob 50/50 of passing it on but less than 1 in 8 of actually getting to birth. Then chances of sb v high

I have 1 dc affected by this. DC has loads of medical / physical / developmental probs and has limited life expectancy

I have 1 unaffected dc

Haven't planned to get pg. Had a coil and was hoping to be referred for sterilisation.

Was fully expecting to mc and haven't. Now am agonising about the cvs

I don't want to have another child with this disorder. Am not seeking to rule out all disability - biggest fear is burying 2 dc. And my other dc loosing all their siblings. As vile and scary I find tx I prefer this option over the former scenario. At least I wouldn't 'know' that child so much and only dh and I would have to deal with. Not my existing dc.

Still - am terrified and desperately uncomfortable with whole thing. Couldn't care less if it hurts me but so scared of mc as a result of procedure. Have had it before btw so know what I'm facing.

Anyone else been in similar situation?

saintlydamemrsturnip Sun 24-May-09 21:56:11

What an awful situation to be in.

Are there any screens they can do which could give some indication of whether this pregnancy is affected?

I'd ask the m/c rate before the cvs for your centre. Also would amnio be an option (perhaps combined with a clear screen if there is such a thing). Although there's not a huge difference, the m/c rate for amnio is slightly less than for cvs.

flappybitsoskin Sun 24-May-09 22:14:52

thank you for reply

have considered amnio but think sooner rather than later. Specially re tx. Not sure that any markers could really be picked up so early on - other than small for dates but that could be for all sorts of reasons - not definitively linked to this.

Paradoxically - thought last week that I was mc (had actually sprained my hip) - and was actually semi relieved that this would be over without me having to make any choices. Yet its actually mc as a result of invasive tests that I fear

Wish I could be more like the woman off 'born to be different' and just accept whatever crops up but instead keep coming up with reasons we 'need' to test

DorisIsAPinkDragon Sun 24-May-09 22:17:45

I do understand was in a similar although not the same situation.

MC for CVS rate was quoted to me as Less than 1% and even better for V experinced consultants.

I too have 1 child with a gentically inherited life limiting condition and a second without and could not have gone through this pregnancy "not knowing" and with the risk of losing 2 of my 3 children early....

I went for cvs and although the wait was horrendous, the procedure itself was not too bad, the wait for the results was awful. We got the result we saw a satisfactory, baby is a carrier but not got the condition.

We also had the added complication of putting the child with the condition already at greater risk due to cross contamination, and I was not prepared to do that.

Fortunately dh and I had talked this through before we had concieved ( and he will be going for a vascetomy fairly soon) and had agreed on our course of action.

Have you talked to your partner about it and how does he feel???

Good luck in your choices, there are a few other also in your situation around, and on the difficult choices threads do not feel you are facing this alone.

My thoughts are with you

Doris X

saintlydamemrsturnip Sun 24-May-09 22:19:59

"Paradoxically - thought last week that I was mc (had actually sprained my hip) - and was actually semi relieved that this would be over without me having to make any choices. Yet its actually mc as a result of invasive tests that I fear"

Yes I can understand that.

flappybitsoskin Sun 24-May-09 22:33:15

thank you Doris. Glad it worked out well for you.

Tis of comfort to know I'm not the only one in this shit pit (not that I want to spread it round, like..)

my dh thinks pretty much the same as me - practically it makes sense to test and tx if condition is found. He thinks 'sooner rather than later' and worries about the practicalities of having 2 complex needs dc. As it is one of us is in hospital with our dc every few weeks and our family is fragmented - how on earth would it work if we had another child with same / similar needs? But then he wobbles and wavers and gets a bit sentimental about our existing poorly dc and how terrible it would have been tx them etc etc Then we talk round in circles and he'll say something like ' lets just not think about it anymore'

flappybitsoskin Sun 24-May-09 22:38:33

aye mrs turnip - the 'choice' thing is a bit of a poisoned challis. I didn't have this 'choice' first time round - nor did my relatives who were blissfully ignorant of cause of sb and infant deaths.

Sometimes I wish I didn't have the knowledge / information I have

saintlydamemrsturnip Sun 24-May-09 22:47:25

Your 'choice' is obviously an impossible one. All you can do is go with your gut I think in these sorts of cases. There's no way you can reason yourself to a decision, it's too difficult.

We had our third child (accidental pregnancy) knowing that he had a very high risk of having ds1's condition (something like 1 in 3 I think) - ds1 will require 24 hour care for the rest of his life, but he is very healthy and has a normal life expectancy & with good support an excellent quality of life so whilst I can understand a little of what you are going through we certainly never faced the difficult choice you are. And there was no test anyway. I'm rather pleased there wasn't really tbh.

DS3 is 4 now and is absolutely fine - I know it's not the same but just wanted you to know it can all work out. I was fairly convinced a lot of the time that with our odds we couldn't get away with it again, but we did.

I wish you all the best and will keep everything crossed for you.

BCNS Sun 24-May-09 22:47:32

Hi flappy,

I don't normally come on these threads.. but saw yours.
I had a CVS when I was pregnant with DD for very similar reasons to yours. ( wasn't offered it with the ds's.
I took it because of the implications of the genetics I'm likey to carry ( if that makes sense).. and I am more than aware how serious this could end up. The seriousness of the condition for me out weighed the risk of MC... and as it happens all was fine. I would probably have carried on with the pregnancy though if the results showed DD to have the condition, it would have then been a case for viability, severity, and quality of life.. of which I have some experience.

if I can help just shout.

DorisIsAPinkDragon Mon 25-May-09 06:43:47

flappy,

We had the same emotional battle with the exisiting dc, i.e. we would not change her for the world. BUT and it was a big BUT for us with 1 DC we are able to cope with the hospital admissions etc, and the needs of our other 'healthy' dc. With 2 we really did not think it would be manageable.

In addition we had no prior knowledge of the condition in our family before dc, but kwnoingly bringing a dc into the world knowing the pain and suffering they would be likely to face also weighed heavily against our (my)selfish desire for a 3rd dc.

Good luck have a look through some of the tests choices threads as there is a support thread for women who have had cvs / amnio and then had to tx, who may be able to give you another perspective aswell.

Will keep an eye on this thread

Doris

JumpingJellyfish Mon 25-May-09 13:15:31

Flappy

I am in a very similar situation to you
<waves at Doris>

In fact our situation is precisely the same as Doris', with the same genetically inherited life limiting condition.

I am currently 11.5 wks pregnant and awaiting CVS- we too decided prior to even considering conception that we would embark on the horrid rollercoaster of a CVS with a view to tx of an affected pregnancy, for similar reasons as Doris outlined.

I am having a real struggle at the moment with the CVS, as my placenta is not cooperating and is currently "inaccessible" so in spite of two attempts so far have not yet had a successful CVS. It looks now like I may have to fly to another hospital early next week to try to find an experienced consultant in transvaginal CVS- the only hospital over here that does CVS won't do them transvaginally. It is not a complication I anticipated and as the wait keeps being prolongued I feel emotionally drained. I opted for the CVS because should the worse happen I need to know as soon as possible as somehow for me it makes it a little easier. Plus we have to keep this pregnancy quiet from everyone as don't want to put them through all the associated worry (or deal with some opinions if I'm honest) and there's only so long I can "hide" it.

I was quoted a 1.3% miscarriage rate for the CVS- based on my consultant's experience. The more experienced the consultant the lower the miscarriage rate- so there's not much difference really to the mc rate of an amnio. The big difference is for genetic conditions results take longer from an amnio (as well as an amnio being done later) as they only gather a few cells which then have to be cultured on, so instead of 5 working days to get results from a CVS it would be 2 weeks or so from an amnio. I just can't wait that long personally.

I am so sorry you are in this position as wouldn't wish it on anyone. It is definitely the hardest thing I have had to face.

Good luck- and do keep posting x

angel1976 Mon 25-May-09 17:08:45

flappybitsoskin - I don't know where you are in the UK and how far along you are so please forgive me if I post some info that is redundant! I haven't been in your situation but did have two CVS with my first pregnancy (that resulted in a healthy DS). I had both at the Harris Birthright Centre in King's College. What happened with the first one was that they took too much of my cells and not enough of the baby (very rare apparently) and they repeated the CVS within like 5 days of the first one and told me that the m/c rate is not increased just because I had two in 5 days. Amazingly, I did not miscarry. So please try not to worry too much.

I did a lot of research on the CVS afterwards as I felt certain that with my next pregnancy, I would opt for a CVS and skip the nuchal as I wanted to know for sure as opposed to be given a 'risk'. Professor Nicolaides (the leading fetal professor in the country and devised the CVS test, I think!) heads both the Harris Birthright Centre and the Fetal Medicine Centre in Harley Street. With Harris, you will need a referral on the NHS and there is no guarantee you will get him but the consultants in Harris are excellent as they are a leading fetal centre.

However, Professor Nicolaides himself looks at high risk pregnancies and does CVS/amnio at the FMC every Wednesday. You can call and get an appointment, you will be told to be prepared to wait. They will give you an appointment time but you will be told you have to call before to find out how much they are running behind. It is worth it though, he is the best of the best in the field and I have heard he has never had a m/c in all his years of doing CVS/amnio (but don't quote me on that!). It is £450 though. FMC They are lovely there and call to have a chat with the receptionist.

Incidentally, I am now pregnant with my second one and have decided against a CVS because I got a low risk screening result and I have decided to take the 'risk' as it comes. But I fully understand why you need to know. I felt that very strongly with my DS. Good luck!

flappybitsoskin Mon 25-May-09 19:35:42

jumpingjellyfish - I had that problem last time round. Ended up having it done at 12 wks+ transabdominal after all as things did move. My centre (in birmingham) wouldn't do transvaginal either. Are you not in UK? - making a guess here with yr talk of flying All the best of luck to you as well

Funny you should mention the FMC angel1976 - that's where I booked to go down and have transvaginal procedure. Decided that it would be worth the money for PN. Problem is I would have to go on the train on my own cos dh would be with our dc. Think I'll stick with here. Keep telling myself it was ok last time (wierdly though I think that's why it should go wrong this time - I had my 'good' luck last pg - if that makes any sense. Doesn't really. Like any of this is good luck)

Person here is not a consultant but associate specialist. Does at least 2 a week though

thank you all for yr replies - Doris, I could have written yr post

JumpingJellyfish Tue 26-May-09 09:23:49

flappy- you have given me some hope that perhaps on Friday things will have moved and they will be able to do it transabdominally. Good to know too that the FMC could do it transvaginally- I emailed them yesterday as we have considered paying privately too.

I live in Northern Ireland, so not too far away, but over here only one hospital offers CVS (transabdominally), so not too many options other than flying to England.

I really hope when the time comes your CVS goes as smoothly as possible and you have good news. I am absolutely dreading the wait for the results, I think I will be in pieces, but hopefully it won't be too much longer.

Wishing you all the best in the world

flappybitsoskin Tue 26-May-09 10:19:52

same to you, jumpingjellyfish. Keeping everything crossed that things move and all goes well on friday

the waiting is truly awful - only advice is to plan stuff to keep you occupied. And bear in mind you've already done most of the waiting pre test

linspins Wed 27-May-09 08:24:20

Flappy, I just wanted to send you a message of support and say I am thinking of you. You are really 'stuck between an rock and a hard place' and it must be such an awful time for you and your family - all the waiting and wondering.
I have had 2 terminations for babies with very severe heart problems and (different) chromosomal abnormalities causing all sorts of other problems, and know the heartache of 'choice'. But my circumstance in no way compares to yours (I just thought you might like to know where I am coming from).
Keeping my fingers firmly crossed for you.
best wishes, Lins xxx

FioFio Wed 27-May-09 09:32:02

Message withdrawn

JumpingJellyfish Wed 27-May-09 10:29:27

Fio- thank you for your support, means a lot xxx

flappybitsoskin Thu 28-May-09 20:48:27

thankyou linspins and fio

JumpingJellyfish - all the best for tomorrow

flappybitsoskin Sat 30-May-09 09:01:55

wondering how you got on, JumpingJellyfish -
here's hoping you are lying down taking it easy afyer having successful cvs

DorisIsAPinkDragon Sat 30-May-09 18:46:12

Likewise Flappy, I guess we won't know until tomorrow as I think JJF only has internet access at work.

JumpingJellyfish Mon 01-Jun-09 10:07:05

Thanks for thinking of me
The CVS did indeed happen on friday- 3rd time lucky. Was so relieved that all nervousness left me, which was a good thing as the consultant had to go in twice to get enough tissue, and it was pretty sore the second time!

So now on the wait. Been very lucky with no spotting etc., and did indeed take it easy on Sat and feel pretty much back to normal now. Should get results hopefully on or before Friday. In a way I am a little lost now, just in limbo, nothing more to do but wish time away. Am so lucky to have my DCs, taking great comfort in them at the moment.

How long until your CVS flappy? Thinking of you lots xx (and good luck Doris too with impending arrival, and with DD2 too xxx)

flappybitsoskin Mon 01-Jun-09 18:08:58

yay - glad to read that. Roll on friday. The waiting is just horrid, innit? Not too long though - 3 or 4 sleeps away

Not so hopeful about my cvs tbh - had a scan last fri which put me back 8 days. Have even 'lost' days from an earlier scan (should have at least shown 14 days growth from that but didn't) Not really a very good sign as I am dead certain of my dates.

Have another scan on a week thurs but realistically expect to have mc before then. Either that or to be told at scan there is no heartbeat

All things considered though, would rather either of these options to having cvs and getting bad results (which am pretty convinced it would be as the growth is biggest indicator at this stage of stuff developing not as it should be)

Hey ho. Don't feel too distraught. Least I have my 2 lovely dc and never intended to have any more bio children anyway (cos all this is just too intense and stressful)

JumpingJellyfish Tue 02-Jun-09 13:53:31

ah flappy, I'm so sorry that you're not too positive about this LO making it to 12 weeks, but I do see how you feel- I too felt better to mc naturally than to have to face the testing and possibility of tx. Time will tell eh.

Time does seem to be standing still at the moment, but know that it will pass, and we will get through this stage.

Wishing you all the best xxx

flappybitsoskin Thu 04-Jun-09 12:54:13

scan today showed no heartbeat (had a bleed on tues)

Hey ho. Am rather relieved to not have a 'choice' tbh. And that its all over cos after the scans my gut feeling about this bean has been pretty awful. All things considered, am OK with it all. Have erpc booked for tues

JumpingJellyfish - have everything crossed for you petal for tomorrow and desperately hope you get some long awaited good news

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