IVF PGD or CVS in pregnancy

[waffle222]

Hi everyone.

I hope it's OK to post here. Has anyone got any experience of IVF for genetic reasons? My partner and I are struggling to decide if this is the best route for us.

My partner has a 50/50 chance of passing on a genetic illness. We have the option of conceiving naturally and having a CVS at 12 weeks to find out, we had a misscarriage last year before we got to the cvs testing. Or we can go down the IVF route but time is not on my partners side. Its such a difficult situation.

Hi, it's a really difficult and personal decision. I'm doing PGD and for me it's turned into a long road. My consultant has said many times that for many people, trying naturally followed by a CVS and termination until an unaffected pregnancy happens is the quickest route to having a baby. Many women don't have a lot of success with IVF, even if they're only doing it for genetic reasons, but can conceive naturally.

CVS following natural conception has never felt like the right option for me for many complicated and sensitive reasons, which is hard in a some ways as I'm now facing the prospect of perhaps not having another child.

If your partner feels she could deal with potentially having two or three terminations before having an unaffected pregnancy, then you might well find that trying naturally is the right route. Given it's a roll of the dice each time, you might get lucky sooner, but that's obviously the chance you take.

Also, it's not talked about much, but there are quite a lot of people quietly having terminations in yours and your partner's situation. I don't know what the condition you're dealing with is, but it's also not true that all terminations for medical reasons are for terminal or extremely debilitating conditions.

@Rosemarypots

Hi, it's a really difficult and personal decision. I'm doing PGD and for me it's turned into a long road. My consultant has said many times that for many people, trying naturally followed by a CVS and termination until an unaffected pregnancy happens is the quickest route to having a baby. Many women don't have a lot of success with IVF, even if they're only doing it for genetic reasons, but can conceive naturally.

CVS following natural conception has never felt like the right option for me for many complicated and sensitive reasons, which is hard in a some ways as I'm now facing the prospect of perhaps not having another child.

If your partner feels she could deal with potentially having two or three terminations before having an unaffected pregnancy, then you might well find that trying naturally is the right route. Given it's a roll of the dice each time, you might get lucky sooner, but that's obviously the chance you take.

Also, it's not talked about much, but there are quite a lot of people quietly having terminations in yours and your partner's situation. I don't know what the condition you're dealing with is, but it's also not true that all terminations for medical reasons are for terminal or extremely debilitating conditions.

Thanks for your message, it is a really difficult decision. I'm sorry your process has taken some time. When I fell pregnant last year it was not planned and I was really upset and distressed at the thought of possibly having to terminate after 12 weeks. We have a 50/50 chance of this. I'm pretty terrified of that having to happen but I'm afraid PGD will take so long my partner won't get much quality time with our child as his illness is terminal.

Have you been through the procedure yet? I'm completely new to this, but I'm worried our odds will be so low with likely 50% of any fertilised eggs having the genetic illness and not being used.

Hope it works out for you 🤞

Hi @waffle222 I'm so sorry - I thought you were talking about time running out for IVF because of your partner planning to carry the baby, given IVF outcomes reduce over time as a woman ages. I see now what you mean with your partner's condition. I'm really sorry you're in this situation.

As you've identified, IVF for genetic purposes is a numbers game. The more day 5/6 embryos you can get to testing, the more likely it is that you'll have unaffected embryos available, which hopefully will result in a baby. If you want a snapshot of your fertility, it's worth paying for a fertility MOT to check your antral follicle count - this gives you an indication of how many eggs you might yield from IVF stimulation. There can often be a big drop off from number of eggs retrieved to day 5/6 embryos, but not always. Your AMH level is also useful info, but the follicle count is most important in this context. However, I've known women with only say six eggs retrieved make four or five day 5/6 embryos for testing - this scenario is more common in women below the age of 35, I'd say.

There are so many variables in terms of how long it will take for you to do your first egg collection, if you're eligible for NHS funding. I'd say it tends to be minimum of six months from first getting the ball rolling, up to two years - particularly for Guys in London, which seems to have long waiting times (only a few centres do PGD). If you go private then it's quicker, but it's very expensive - you're talking about £40-£50k for three retrievals plus a couple of transfers, or £20k for one round and a transfer.

Happy for you to PM me if you want more info.

@Rosemarypots

Hi *@waffle222* I'm so sorry - I thought you were talking about time running out for IVF because of your partner planning to carry the baby, given IVF outcomes reduce over time as a woman ages. I see now what you mean with your partner's condition. I'm really sorry you're in this situation.

As you've identified, IVF for genetic purposes is a numbers game. The more day 5/6 embryos you can get to testing, the more likely it is that you'll have unaffected embryos available, which hopefully will result in a baby. If you want a snapshot of your fertility, it's worth paying for a fertility MOT to check your antral follicle count - this gives you an indication of how many eggs you might yield from IVF stimulation. There can often be a big drop off from number of eggs retrieved to day 5/6 embryos, but not always. Your AMH level is also useful info, but the follicle count is most important in this context. However, I've known women with only say six eggs retrieved make four or five day 5/6 embryos for testing - this scenario is more common in women below the age of 35, I'd say.

There are so many variables in terms of how long it will take for you to do your first egg collection, if you're eligible for NHS funding. I'd say it tends to be minimum of six months from first getting the ball rolling, up to two years - particularly for Guys in London, which seems to have long waiting times (only a few centres do PGD). If you go private then it's quicker, but it's very expensive - you're talking about £40-£50k for three retrievals plus a couple of transfers, or £20k for one round and a transfer.

Happy for you to PM me if you want more info.

Thanks for all that information. I'm completely new to IVF and trying to understand it. We are eligible for NHS funding so we are waiting to see what the next step is. Im having a look into the fertility check for the follicle count, thanks for suggesting that. It does seem like a very complicated process.. I need to decide if I would want to go through it or if I could handle a TFMR after tests of a natural pregnancy. I feel like I'm really stuck on this decision. My partner seems more keen to go the natural route but I think he's underestimating the strain and emotional toll involved. I think he's thinking purely about how much time he's got which is fair enough. :(

Hi op, I’m so sorry to hear this
I had pgs for poor egg quality, so a different reason. I had many mmcs and couldn’t handle any more. I understand time is an issue but I felt my mcs ‘wasted’ a lot of time . Up to 3 months of pregnancy and then you add another 3 months for miscarrying and recovery before trying again. That’s before you even consider the pain and heartache of a loss.
I decided to test my embryos so that at least I knew the one being put back did not have a chromosome issue. I was glad as I got two embryos, one was normal and the other had three chromosome issues and would have miscarried. It enabled me to choose the better one and avoid the inevitable. For me ( done privately) pgs added only added 2 weeks to the process. I’m not sure if what you’re doing is different though.

I'm sort of the opposite of previous poster - I also did PGS due to multiple miscarriages as it was the final investigation we hadn't done. Age 36 I didn't get any "normals" and in the U.K. you aren't allowed to transfer abnormals and only a few clinics will agree to a mosaic - so there is massive risk you could get some embryos that don't have the faulty gene but are abnormal/mosaic and in which case you have to destroy them anyway

I decided if it was a choice between going through another miscarriage or destroying my embryos then I could do another miscarriage. I transferred 2 untested on the next transfer and had healthy twins

(I had joined lots of groups where it's common to be able to transfer abnormal embryos in the USA and lots of women were having healthy babies) but doing PGS for miscarriage reason it's different to PGS for a known genetic disorder

But I appreciate TFMR after 12 weeks is totally different to a miscarriage under 12 weeks

Is there a way of finding out earlier than 12 weeks if the baby is affected or do you have to wait for CVS/amnio?

I think it's important to separate PGD (or PGT-M), which tests for a specific single gene disorder, from PGS (or PGT-A), which tests abnormalities in the number of chromosomes.

Doing PGD doesn't necessarily mean somebody does PGS as well. Guys won't do PGS alongside PGD for NHS patients (not sure about private), whereas CRGH does both routinely. An affected embryo for PGD purposes is almost certain to be affected by the genetic disorder somebody is trying to avoid - the margin of error is very small.

Sadly it isn't possible to do a CVS before about 11 weeks because of risks to the foetus from the testing. If it was possible to test in the 4-6 week period then that would be a game changer I think.

@bonetiredwithtwins

I'm sort of the opposite of previous poster - I also did PGS due to multiple miscarriages as it was the final investigation we hadn't done. Age 36 I didn't get any "normals" and in the U.K. you aren't allowed to transfer abnormals and only a few clinics will agree to a mosaic - so there is massive risk you could get some embryos that don't have the faulty gene but are abnormal/mosaic and in which case you have to destroy them anyway

I decided if it was a choice between going through another miscarriage or destroying my embryos then I could do another miscarriage. I transferred 2 untested on the next transfer and had healthy twins

(I had joined lots of groups where it's common to be able to transfer abnormal embryos in the USA and lots of women were having healthy babies) but doing PGS for miscarriage reason it's different to PGS for a known genetic disorder

But I appreciate TFMR after 12 weeks is totally different to a miscarriage under 12 weeks

Is there a way of finding out earlier than 12 weeks if the baby is affected or do you have to wait for CVS/amnio?

Thanks for the reply. Sorry to hear about your misscarriages but lovely to hear you've had twins.

I'm totally new to IVF so sorry if I'm not following what you mean. Do you mean they test the embryos for the genetics but also mosiac/abnormal in PGD but not if you don't get PGD? And they can't transfer 'abnormal' embryos? I can see how that could reduce chances of pregnancy by a lot.

No its only CVS or amnio for diagnosis. Well technically we could get a NIPT privately a couple of weeks earlier but as its not what the standard NIPT tests look for theyd have to do more specific tests and would cost us £3000-£4000. My partners genetic doctor told us that. For the sake of a week or two, its not worth it.

I've had misscarriages but all around 8/9 weeks. The thought of a TFMR is so difficult. But the wait for IVF and how grueling it sounds, is also not appealing. Feel like it's lose/lose. 🥺

@Rosemarypots

I think it's important to separate PGD (or PGT-M), which tests for a specific single gene disorder, from PGS (or PGT-A), which tests abnormalities in the number of chromosomes.

Doing PGD doesn't necessarily mean somebody does PGS as well. Guys won't do PGS alongside PGD for NHS patients (not sure about private), whereas CRGH does both routinely. An affected embryo for PGD purposes is almost certain to be affected by the genetic disorder somebody is trying to avoid - the margin of error is very small.

Sadly it isn't possible to do a CVS before about 11 weeks because of risks to the foetus from the testing. If it was possible to test in the 4-6 week period then that would be a game changer I think.

Thanks for explaining that. Yes we would be doing PGD only. Does that mean we wouldn't need the embryos tested for abnormalities, just for the specific gene issue? We are in Scotland, I'm not sure yet where we would be referred to for treatment but we have a meeting on Monday to discuss it.

I wish they'd do the specific NIPT test on the NHS. It would still be hard to TFMR after the results but easier being a little bit earlier and non invasive. I was terrified to have the CVS last pregnancy.. But we never got there in the end.

@Dreamsofholidays78

Hi op, I’m so sorry to hear this I had pgs for poor egg quality, so a different reason. I had many mmcs and couldn’t handle any more. I understand time is an issue but I felt my mcs ‘wasted’ a lot of time . Up to 3 months of pregnancy and then you add another 3 months for miscarrying and recovery before trying again. That’s before you even consider the pain and heartache of a loss. I decided to test my embryos so that at least I knew the one being put back did not have a chromosome issue. I was glad as I got two embryos, one was normal and the other had three chromosome issues and would have miscarried. It enabled me to choose the better one and avoid the inevitable. For me ( done privately) pgs added only added 2 weeks to the process. I’m not sure if what you’re doing is different though.

Thank you for sharing. Sorry for your losses. I understand what you mean about time. I got pregnant in October, and I'm only just physically considered trying again. Getting AF this month after half trying made me so emotional. I feel I'm still very raw about the last miscarriage, the whole process takes a long time and a lot of physical and emotional healing. So I understand what you mean regarding natural conception not necessarily being the 'quicker' option.

Eugh, my heads so foggy from it all. Its taking its toll on me... Sometimes I wonder if this is right at all. To bring a child in to the world knowing they will lose their parent. But I feel he deserves to be a dad and I'd love that child forever for being his. It's so difficult.

Warning - sensitive post

Hi @waffle222.

I'm not sure about whether or not clinics in Scotland do PGS as standard with PGD. More generally, many people would consider PGS to be optional, and the regulator the HFEA considers it to be an add on.

How you move forward is a very personal decision. Families are formed in all different ways, and if you really want a child, would love it and provide for it and have a plan for how you'll manage things in the future, then you're getting off to a good start. If I were you I wouldn't invite comment on this from anyone other than your very closest, most thoughtful loved ones, as it's easy for people who aren't in your shoes to judge and say they wouldn't do it etc.

Just another couple of points on pre-natal testing. Firstly, if you do take this route, then make sure you have the testing and the hospital that would do the termination, should the news not be good news, lined up in advance. The last thing you want to do is to be creeping past 15 weeks because you can't get everything lined up on time. I've known of women prefer the surgical option at 11/12 weeks in a pre-natal testing situation, but everyone is different.

I've also heard people say that the pain of pre-natal testing and it's consequences fades when a woman does at some point get to take home an unaffected baby - whether that’s their first or fourth pregnancy. However, as in my first post, it's all about chance and how many times you can bear to roll the dice. Personally I felt that I could easily find myself in a position where I'd had two or three terminations in a row, and might then feel too distressed to keep trying. So in that case I could find myself with the trauma of everything I’d gone through and no baby at the end of it. But again, everyone is different - some women find the IVF process harrowing, whereas I’ve found it tough but manageable.

Wishing you all the best for your appointment tomorrow x

Thank you for all the replies.

You've been very helpful Rosemary Pots. We had our PGD meeting and looks likely to be over 3 years before we can start treatment in our area. That's too long for us due to my partners health. So we are thinking of being brave and trying naturally a couple of months and see.

I just hope we are one of the lucky ones. X

Hope I can help by sharing my story- I also have a genetic condition with a 50/50 chance of being passed on (depends entirely on the egg I release) I would not be able to continue with pregnancy should the baby be affected as they would be unlikely to survive and if they did would only be for a few weeks and they would suffer for all that time!

With that in mind we got a referral for PGD we decided this coz I had PCOS and was told it was unlikely we would be able to get pregnant and I'd not had a period for 6 months anyway!

However 3 days before our appt with the fertility specialist we found out we were pregnant I still don't know how as we had been careful as we were told to be!

We had CVS at 11 weeks and luckily this baby was healthy!!

I always wanted 2 kids as I'm a twin so have never not had a sibling! We were no longer entitled to PGD on the NHS due to having a healthy baby (we were told it cost around £15k per cycle and there is usually a 1 in 3 success rate but they thought we had a better chance) we decided that while we could afford it it would limit what we could do with our DD but would revisit this later if needs be!

When my DD was 1.5 we got pregnant by happy accident again but found out at 11 weeks from CVS that our little boy had Down syndrome and the genetic condition too so had a TFMR a week before Christmas!

Then the year after, after TTC for 5 months (had a chemical after 3 months) we got pregnant again this little boy was also affected and had to have another TFMR (both of my TFMRs had complications and I had to have blood transfusions both times but this is another story).

Finally after the due date for this boy passed we got pregnant the first month of trying and after CVS found out our DD2 was healthy and she is now 16 mo!

As the gender is decided by the sperm it was coincidence that the two affected babies were boys and the healthy ones were girls!

You need to do what is best for you it is heartbreaking having to have a TFMR but I know I made the best decision for that baby and my family -it would have been selfish to continue with pregnancy and I know I could not bring a baby into the world to suffer it could feel pain once it got bigger or was born but not at 12 weeks!

Just another note my first CVS wasn't bad at all but after the subsequent ones I felt really sick!

Good luck!

My 4th pregnancy would be my last which ever way it went I don't think I could continue trying had I had to have another TFMR we may have gone for PGD if this baby wasn't healthy but my DH was a bit reluctant to do that as he wanted us to be able to do more things with our DD -she kept begging for a sibling tho and it broke my heart every time!