CVS / Genetic Testing dilema

[HollyC]

I didn't have to pay for my cvs or amnio. I went to a public hospital, which I think was good because they were very experienced. But the cost is really the least worry.

I'm wondering why you would terminate before 14 weeks but not after? You don't have to answer. I guess I'm just thinking that it would be really difficult at any point.

Initially we were told that our baby wouldn't survive pregnancy. At this point I was going to terminate because I thought it would be easier to terminate surgically rather than wait for the inevitable.

It does sound like you have made up your mind. And please know that whatever choice you make you have lots of support.

[Talia*L]

Dianne, thank you so much for sharing that. I am sorry for what you went through.

Holly re. the 14 weeks - it's not a clear cutoff for me, but rather that the choice (cvs results vs amnio) means 12 - 14 weeks termination, versus 18 - 20 weeks termination, with nothing in between. For me, 18 - 20 weeks is just getting a bit late for me personally to feel is the right choice for me. Only because, I feel that if a baby can survive even for a little while after being born at 20 weeks, I would rather / may as well carry to term, and have the baby put on support and pain killers and get to spend some time with my baby, rather than delivering and the baby dying straight away.

Sorry I don't even know if that makes sense. And maybe it's a selfish or naive decision. But hey, when you're pregnant or a mother, you really just need to go on your own instincts to some degree, right?

I went to my GP last night, he is pretty anti getting the CVS. He thinks all this modern testing causes more worry than it's worth lol! He also said, "how would you feel if the CVS caused a miscarriage and the baby was perfectly fine?"

But I just keep coming back to the fact that, if I do NOT have the testing, I know I will be obsessively worrying for the next 6 months. I want to be able to enjoy my pregnancy...

[diannescruffy]

I just wanted to add that there is a big difference in terminating an early pregnancy to terminating later on. The procedure is different and after 20wks a baby receives a birth certificate and if they are not liveborn they receive a death certificate with also means a funeral. There is just so much to think about and Talia you are so right, you need to go with your motherly instincts. Your risk of carrying a child with Trisomy seem very low so I will be praying that you are carrying a very healthy bub. Please let us know how it all goes.

Regards,
Dianne

[HotI]

Holly re. the 14 weeks - it's not a clear cutoff for me, but rather that the choice (cvs results vs amnio) means 12 - 14 weeks termination, versus 18 - 20 weeks termination, with nothing in between. For me, 18 - 20 weeks is just getting a bit late for me personally to feel is the right choice for me. Only because, I feel that if a baby can survive even for a little while after being born at 20 weeks, I would rather / may as well carry to term, and have the baby put on support and pain killers and get to spend some time with my baby, rather than delivering and the baby dying straight away.

Talia, your explanation makes perfect sense to me.

It must be so hard getting different opinions from different people, hard to work out what your own head is thinking.

First trimester screening (a blood test at 10.5 weeks and an ultrasound at 11.5 weeks) could give you more info on the pregnancy, and whether your bub is at higher risk of T13 based on physical markers. These results would be in before you would have your CVS.

So you could book in for the CVS, and use the results of the screening to help you decide whether to go ahead or not.

I have two conditions that my bub may inherit, but unfortunately (or fortunately?) genetic tests are not available. One of them may be able to picked up at 20 weeks, but the other is a waiting game. These conditions are not as serious as T13, but i have a slight inkling into some of the thoughts that might be going through your head.

I fought so hard to find a genetic test but was almost relieved when there wasn't one available, because i know how hard the decision to use the test would be.

take care,

Kate

[OceanPrincess]

...I went to my GP last night, he is pretty anti getting the CVS. He thinks all this modern testing causes more worry than it's worth lol! He also said, "how would you feel if the CVS caused a miscarriage and the baby was perfectly fine?"

OMG, I can't believe a GP said that to you. How heartless. I would be changing GPs - you need someone so supportive in a time like this.

I've been in your position - for me the risk of miscarriage was outweighed by the knowledge offered by CVS. At the time of the procedure, our baby only had a one in 10 chance of being born "normal and healthy". If it wasn't a chromosomal abnormality, it could possibly have been a major defect in one of her organs (eg heart).

She's now a bouncing 8mth old who is an absolute picture of health but we chose the CVS because like you I would have stressed out for the rest of the pregnancy without knowing.

The other posters are right, a skilled practitioner will decrease the risk but its not measurable. The other thing to consider is one of the reasons the risk is lower with amnio is that amnio has been around longer and has been performed more - the risk continues to decrease the more CVS is performed.

Good luck - this is such a personal decision. I wish you all the best

[Talia*L]

Ohh Oceanprincess, thanks for your reply - please don't worry, he is really the most lovely and nurturing care provider! The tone of his voice was most thoughtful and caring, and he said it with an arm on my shoulder - he was just making sure I was considering all the options.

[HollyC]

I do understand what you are saying about a later termination. Just thought I would mention that I was still being offered a surgical termination depending on my amnio results. Apparently I would still have met the time limits.

If your concern is birthing your baby rather than a surgical termination, it might be worth talking to you doctor further. My regular doctor couldn't do a late surgical termination, but there was another one who could.

If it came to it I would have much preferred to have a surgical termination as the baby passes away early in the procedure without suffering.


After losing a baby at 12 weeks I look at pregnancy differently. I know that with some people as soon as they are pregnant they say they are having a baby. When I'm pregnant, I'm just pregnant and there is no guarantee of a baby, I just take things one day at a time and hope for the best. Anything can go wrong and sometimes it does. So when it comes to taking the risk of having a cvs and an amnio, well I just see that as part of the uncertainty of pregnancy. It is not something I have any control over and certainly not something I chose.

So in response to the question of how I would have felt if either the cvs or the amnio caused me to miscarry my baby...... I would be devastated, but I would not feel that it was my fault.


I have gone through a lot with this pregnancy. It wasn't until I was about 20 weeks that we had all the test results back and while they were all good they aren't conclusive. All they can tell us is that they haven't found anything wrong, not that there definitely is nothing wrong. We will just have to wait and see when it is born and as it grows up. I have found it really difficult to enjoy this pregnancy. I have been hiding away from friends and family until I had all the test results and now that I'm finally telling people about the pregnancy they want to know why I have been keeping it from them.

I hope hearing some other stories helps you with your decision.

[Talia*L]

Thanks for your thoughtful reply Holly. I appreciate it!

I do understand what you are saying about a later termination. Just thought I would mention that I was still being offered a surgical termination depending on my amnio results. Apparently I would still have met the time limits.

If your concern is birthing your baby rather than a surgical termination, it might be worth talking to you doctor further. My regular doctor couldn't do a late surgical termination, but there was another one who could.

Hmm yes I think that I would elect to birth rather than surgically terminate. I'm sure the surgical termination is a good option at 20 weeks. But I just can't get my head around it, I think I would have nightmares for ever. I already did the first time I was told about it! Eeeeek so yes all this confirms that amnio is not a good option for me! I'm glad to have worked that out at least.

After losing a baby at 12 weeks I look at pregnancy differently. I know that with some people as soon as they are pregnant they say they are having a baby. When I'm pregnant, I'm just pregnant and there is no guarantee of a baby, I just take things one day at a time and hope for the best. Anything can go wrong and sometimes it does. So when it comes to taking the risk of having a cvs and an amnio, well I just see that as part of the uncertainty of pregnancy. It is not something I have any control over and certainly not something I chose.

Yes Holly i agree, I feel this way too I think. I am so wary of thinking about 'the baby'. I am just focused on being pregnant. I have always prepared myself for miscarriages, based on my condition, so any pregnancy that works out is a total blessing, not a given, for me.

Thanks again for your thoughts, they have been very helpful!

[Razzberry]

Talia - I was in your position not too long ago. We were told my baby probably had trisomy 13 or 18 and wouldn't survive. I had already had a miscarriage so was incredibly terrified of it happening again if I had the CVS. In the end we had the CVS as I couldn't handle not knowing and mental health wise I needed to know. We were told a D and C could be done till 14-15 weeks but after that I would have to go through induced labour, so I fet I needed to know earlier than later.
In our case our tests came back all clear and I ha my daughter Ella 4 weeks ago. I was still stressed throughout the whole pregnancy but it did help that some things were crossed off the list.

Big Hugs for you hun xox

[csab]

Thats good you have come to a decision as to what you would prefer to do. For me, I was told that I would have to have the CVS and not the amnio, due to two precious c/s's, as they did not want me to have to birth the baby if I waited for the amnio, due to the scarring rupturing. Also for me I needed to know the results asap. I had to weigh up the risk of m/c of 1 in 100, or the risk of something being wrong with my bub being 1 in 28, so the risk of m/cing with a cvs was far less. I had the head DR of the feto maternal unit at the hospital, who was very experienced in doing the procedure as he does them all the time, so I also knew I was in good hands. MIne however was done internally due to the position of the placenta as it was low and to go through the stomach would have been risky for me, could have caused damage to the bowel. When they did it internally it was like a pap smear and was over in just a couple of minutes. My cvs also didnt cost anything, due to going public.

All the best hun, I wish you a happy and healthy baby. hugs

[Talia*L]

So I am interested in the option of public. I believe we 'qualify', as we have a genetic condition, and have been seeing the genetic counsellors.

My main concern is the safety of the procedure - which seems to be linked quite strongly to the experience of the professional. I have had recommendations for the guy I am booked with (Paul Shekleton) - plus I know he is a pioneer in in-vitro surgery, so he seems to have a steady hand (LOL Human Services News - Foetal surgery a Victorian first - March 2005 ).

Having said that, I am thinking that the public hospitals do loads of CVS too. So I am wondering if I am better going public or private for CVS. For those who have gone public, did you know in advance who would be performing the procedure? Jeepers I am starting to realise what a worry wart I am. My poor children eek.

[HotI]

The genetic counsellor should be able to help you out with info on who would be performing your CVS (if you decide to go through their clinic). I think it is pretty rare that people have CVS privately, especially when a genetic risk has been identified.

Have you asked Paul Shekleton if he performs CVS in the public system?

take care

[csab]

When I was told that I need to consider doing a CVS, I was also told that there were 2 DR's that are the only ones that would be doing the procedure, and due to where the location of the placenta (down low) and that an internal CVS would need to be done, I was told that the head DR of the feotal Maternal unit is the only one that does the internal CVS's, and that he only did them on a certain day of the week, which for me was the next day. I was also told that he had done hundreds of the CVS's. He was very qualified. I would assume that you would be told who waqs going to do the cvs, but i would ask how qualified they are, such as how experienced they are at doing the procedure. You would probably find that most private DR's also work in the public hospitals.