IVF with PGT-M Error

[CharlotteLP]

Hi, we have been undergoing IVF, and after all the drugs which led to a number of excruciating sleepless nights, we finally have 5 embryos and have been looking forward to the transfer next month.

In addition to IVF, we chose to add on PGT-M, which is an additional genetic screening of the embryos, as my husband has a heart condition which we would like to rule out if possible.

With a month to go, the clinic called me yesterday, and told me that because a member of staff had been furloughed, an email had been missed back in March and they had not started 'enrolment of the test process'. This is where they tailor the genetic test to your particular scenario, and can take a long time.

They said that as a result of this, we would now need to wait another 3 months for the transfer. I've been building mentally towards this and have continued working from home, which I'm not sure will be allowed to continue much longer. Everything has been working towards this transfer date, and I just don't think I can cope with this extra delay. Our treatment was already delayed 2 months due to lockdown, and this just feels like an extra twist of the knife which is in no way our fault!

I just don't know what to do. The clinic has said we can proceed without the genetic testing, but I know my husband would be devastated. But I've been so up and down and I just don't know how I'll cope with 3 more months of uncertainty. There could be another delay or mistake down the line, or we could go into another lockdown. Whatever we decide, one of us will be hurt.

Hi @CharlotteLP honestly it’s worth waiting for if it’s important for you and your husband! Admittedly the clinic did a piss poor performance of providing you the timelines but the good news is you have 5 healthy embroils and they are ready to transfer. Many women were waiting for their FETs I’ve covid too so it’s just a similar situation. I would advise to wait because gos forbid if you do have a baby with the condition, the guilt of not waiting will be worse. Best of luck and stay strong x

That is really awful @CharlotteLP, very very poor on the clinic's part.
Are they NHS or private? Only asking because if private perhaps there would be more motivation to rectify the error by having more people working on the test to have it ready sooner.
I would let them know in very strong terms how disappointed you are but not sure how much quicker they can get the test ready. Can they contact other experts to se if there are cases similar to yours? Or a charity that supports people with this inherited condition may be able to advise.

It depends on the severity of the condition but if it's bad enough that you chose to opt for screening (is that why you had IVF or was it an addition).
We had the option to try to screen out a faulty gene that DH could pass on but in the end opted not to screen for it as the clinic would then not have let us go ahead and transfer and the gene doesn't definitely mean there would be a problem, just a high risk.

@ChicaXS I think the OP's upset is because she doesn't know if she has 5 healthy embryos.

OP what if they all come back with the gene, have you and DH discussed that?

Yes I understand and it’s a hard situation. By healthy, I meant that she still has embryo is for transfer with a chance they don’t carry the condition, but totally agree it’s a difficult situation. I would still wait to do PG testing. This may be private as I read somewhere NHS doesn’t cover PGS testing?? Xx

If your husband has the condition presumably it's more than survivable and doesn't impact on his daily life or has he had a transplant/operations etc?

I only ask because what will you do if all the embryos come back as affected and you don't have any to transfer? Are they looking for general euploidy as well as your specific genetic condition?

I PGS tested last year - not for a genetic condition but for general chromosome issues - I was 36 at the time so not "that" old and the "odds" are that at least 50% of my embryos should have been normal. Well I didn't get any "normal" embryos and legally in the U.K. clinics are not allowed to transfer chromosomally abnormal embryos so you could end up with nothing?

I decided not to do anymore testing and am currently 7 weeks pregnant with twins x

Hi @ChicaXS I know what you mean, it seems like there are 5 embryos in the running, but depending on the results that could change.
It also depends a lot on the condition and its effect on a person, whether it could be a reason to have a termination for medical reasons / what could be known in utero.
In some cases the NHS will fund testing, like much of the NHS treatment it's a lottery.
Through a support group we were in touch with someone in NI who was going to have NHS treatment to screen out the gene my DH has but our CCG in England did not entertain it, though others might. The first private clinic we contacted did not mention it at all, the second one did and that's when we knew it was even possible. We need IVF anyway, have been TTC for ages.
DH's issue is if you think along the lines of some women have a genetic tendency to certain types of breast cancer but won't definitely get it, but may be offered screening or choose preventative measures).
Anyway we've decided to go ahead without this particular screening but will have general PGS. We might feel differently if it was a certainty that any child would be affected but it's not certain that they would inherit the gene, and if they did it's not certain that they would develop the cancer, plus I expect (hope) that better cancer screening and treatment will be developed.

@ivfdreaming that was very bad luck last year but what wonderful news now, congratulations!

Thank you for your thoughts, does help get my head round it!

The embryos are of varying quality, from one that's 4AA down to 4BC, and one was a 6-day blastocyst, so some are more promising than others.

There's a lot of conflicting advice from clinics about how much more risky 6-day blastocysts are. Our clinic say they've had just as much success with them, yet they still choose a 5-day one when they can.

Very disappointed with the clinic, as there was way more time than needed to create this PGT-M test, and a ton of chances to spot the mistake in our file as we called or emailed about the progress or with questions several times a week over lockdown. I'm hopeful they will offer us some means of recompense.

It's a private clinic, and 3 months is the wait once they've expedited the process due to the error! They've said that's all they can possibly do.

We're doing PGT-A as well (checking chromosome balance / euploidy). We've been told that as this test only takes 2 weeks we could choose to have that one only and keep the transfer on track.

The heart condition is hypertrophic cardiomyopathy, and while my husband has had a good quality of life, he also has an ICD (Implantable Cardioverter Defibrillator) device surgically put in his chest which helps in case of heart attack, and he needs 4 medications daily.

We'd be quite happy to use an embryo with this condition if it was the only option, and have been told we can do so, but of course we'd like to spare a child that if we can.

Some embryos may be aneuploid, not every transfer's successful, and we'd like to keep any embryos we don't use this time round for a 2nd child, so it could be that we need all the embryos, whether they carry the heart gene or not!

This horrible mistake has put my priority (no further delays and stress) directly against my husband's (PGT-M screening), and is continuing to cause a lot of upset.

@CharlotteLP

Don't worry about the day 6 blastocyst.....one of the twins I'm currently pregnant with is a day 6 x