PGS testing disaster - can anyone help?

[Everhopeful35]

My husband and I just found that all 7 of the embryos we sent for PGS testing are abnormal. We’re absolutely devastated. Two embryos were from our first IVF round, five from our second round. We tested them all following a chromosomal twin miscarriage from our first round, as we were keen to avoid another disaster. That means we definitely had nine chromosomal issues. Before IVF, we suffered two natural miscarriages and a chemical pregnancy, but were told the problem was to do with NK cells. I’m so confused now. We’ve both had karyotyping and don’t have an underlying genetic issue, but the clinic said it’s a numerical chromosome issue where the embryo isn’t dividing properly - nothing that duet/supplements etc can help with. It’s just chance. They have encouraged us to try again with a different stimulation protocol to see if it helps, as I have a good ovarian reserve and an still relatively young. But my motivation is so low. I know there are limitations to PGS testing but it’s something we’re set on given our history... so I guess what I want to know is whether anyone had a huge number of abnormal embryos and went on to get some normals in a subsequent round?

Hi @Everhopeful35 - I was with you on the IVF boards but changed names since then (I'm the one having twins).

Sorry to hear about your embryos - did you get a copy of the report and who the testing was done by? It would be interesting to see what chromosomes were impacted - whether it was the same ones? Whether it was single chromosomes or complex abnormals and multiple chromosomes? You should also ask whether they DO report mosaics as some clinics just report everything as abnormal when some might be mosaics and actually be transferable? There is sometimes also the option of transferring them to a different clinic and retesting them but that can be just as expensive as doing another round - I recall you are with ARGC?

I had a similar issue age 36 except I didn't have anywhere near as many blastocysts to test. And also didn't get any normals. I decided not to test again as couldn't being myself to spend all that money and then have to destroy them. I did change to natural modified IVF on my next egg collection and that's where my twins are from. This is after having 5 miscarriages

Hi @ivfbeenbusy, how are you? I hope your pregnancy is going well!

Thank you for responding to my post. We did get the genetic report - the testing was done by Igenomix and, no, the chromosomes impacted are different every time. Some are missing one or half a chromosome, some have an extra, a few have multiple issues. It's all random. We've had karyotyping done, which has ruled out an underlying issue. It's apparently just how the cells divide during the creation of the embryo. There were no mosaics, only abnormals.

I think I'd probably avoid retesting them, as it could be a huge waste of money and I'd rather spend that on another round of IVF. ARGC have recommended the long protocol for me this time, in an attempt to try and change the way I'm stimulated. I've only done flare/short protocol up until now.

The thing that I'm confused by is that I seem to produce a lot of eggs (22 this time, 17 last time), so you would think that, by the law of odds, one of them would have been decent if the issue is with the egg?

I think we'll try the long protocol and see what happens, and if that doesn't work we may try the natural/modified route. I really don't want to consider donor egg and sperm at this stage.

Do you know what caused your five miscarriages? Were they chromosomal? We could only get one of ours tested and it was our IVF pregnancy loss in July. It was a trisomy, so we know that we have now had eight that are definitely abnormal.

Just feel very confused!

@Everhopeful35

Things going well Thankyou! One twin much smaller than the other which is causing some stress so just got to see how they progress over the next few weeks

It sounds alike they might have classified sefmentals as abnormal then? Where it's not missing a full Chromosome but a part of the arm?

I never found the cause of our miscarriages but assume chromosomal as they were usually after 7 weeks up to 12 weeks and also based on the PGS testing we did do.

I also wouldn't give up on your own eggs yet. We said we wouldn't give up until we'd tried all the different protocols. You do get good egg numbers and blastocyst numbers but for me the more eggs I had the worse the quality seemed to be. My twins are from the cycle I only focussed on 2 follicles compared to the 14 I was previously. Maybe ask them about the trigger shot too? I did a double trigger shot for my natural modified cycles x

@ivfbeenbusy Thanks for raising this (are you a scientist, by the way? You are very knowledgeable on chromosomes). I emailed the embryologist about this last night and she came back saying that this one wasn't a mosaic - that would be where not all the cells tested have a missing q arm. In our case, all the cells taken from the blastocyst (6 cells) showed -7q deletion. It was a full clear loss and this apparently leads to Williams syndrome.

Can I ask, we're all of your miscarriages through IVF? We were getting pregnant naturally before doing IVF, but thought this might give some more control to the situation given our losses. We thought we might go back to trying naturally, but ARGC have advised against it because they said there's a strong likelihood of further miscarriages. What's the benefit if a double trigger shot, by the way? That's interesting.

I'm so sorry to hear one of your twins is measuring a bit behind. Did they say that often happens?

x

Hi no I'm not a scientist! Far from it! But I've had a lot of sleepless nights over the last 5 years of infertility and pregnancy loss to and read a lot of medical journals and I feel more in control when I've researched (the consultant at my clinic used to joke about what I'd been researching lately 🤣). Plus when I did my PGS testing I read a lot too

I've never actually had a miscarriage through IVF bizarrely - all 5 of mine were natural. (Of my ectopics 1 was natural and 1 was IVF) so we did IVF to try and understand why when we didn't get any answers from the recurrent miscarriage clinic.

I'm in two minds about ARGC advice - do they just want your money hence why they are saying don't try naturally???🤔

I do think a lot of IVF success hinges on finding that right mix of drugs which specifically works for you - hence why my natural modified cycles yielded much better results than short protocol.
Would you consider doing another cycle but not testing? My clinic asked me that - at that point after 7 losses I said yes I was strong enough to go through another miscarriage i wasn't strong enough to deal with another cycle of PGS and habit to destroy embryos.

I'd recommend joining some Facebook groups about abnormal embryos and PGS testing - lots of knowledgeable members from the USA mainly as you can transfer abnormals out there

The trigger shot basically ensure that the 46 chromosomes that exist in the egg in the follicle reduce to 23. Sometimes clinics give 2 to ensure better release of eggs etc.

Apparently having some size difference in twins is normal. One is a boy and one is a girl which is also a factor and also likely because the embryos were totally different stages when they were transferred. If the little one grows consistently she should be fine but she has been slipping behind her brother further and further each scan x

Hi Everhopeful35, how are you?
Over a year on did you continue with your IVF journey?
Did you continue with the PGS Testing?
Hopefully, you have your little miracle now x