PGD IVF

[Sunisshining12]

Hi. I’m looking for recommendations for clinics that offer IVF with PGD. Preferably the more reasonably priced! with good success rates.

We have a disabled daughter who has respiratory issues, feeding tube, can’t walk etc. But she only has slightly delayed intellect & think she would love the company of a sibling. She was recently diagnosed with a rare genetic condition that both my husband & I are carriers are of (we had no idea). So this now means there is a 1 in 4 chance another child would be affected as it’s a recessive condition. Obviously our daughter was an unlucky 1 in 4.

We don’t have known fertility issues (have conceived naturally twice - one mmc, one daughter). 30s, non smokers & healthy bmi.

I understand we can be referred on nhs. But what puts me off is the long waiting times for appts, and again if the cycle fails. And they would need to apply for a license for this particular genetic condition as it’s not yet been used. The nhs success rates of a live birth are 30-35%, that doesn’t seem great? Was also told they will only implant 1 embryo. Not 2 or 3. Maybe that is why the nhs rate is lower? I would prefer 2 to be implanted. I may be mad but I would be thrilled with a single baby or twins! Do private clinics plant more?

Anyway, just trying to learn all that it entails. Thanks

You would need the license regardless of NHS or private I believe so do check/consider that when thinking about time scales.
Twins are much higher risk and implanting two can reduce your success rate so again do your research

I see. Thanks for the info. So we still need the licence. What are the timescales at private clinics?

Can you afford to go to the US? Maybe combine it with a holiday in California? No waiting lists, they let you put 2 back and you could pick your genders if you so chose.

We did this and I’m happy to answer any questions.

Dammit, I typed you a long lovely reply and then lost it. This is the brisk version, sorry:

• Transferring 2 won't much increase your odds of success but will increase the risk of twins (and with it the risk of serious complications).
• If you had two available to transfer, the cumulative success rate would be higher be transferring one and freezing the other for a later FET if needed.
• I would regard transferring three as madness except in an older woman (well into her 40s and beyond) with repeated history of implantation failure.
• Those success rates are just the reality of IVF. It's not the magic bullet people anticipate.
• It also doesn't typically result in the large numbers of embryos people imagine, so this may all be academic anyway.
• It's still amazing.
• If the NHS were offering me a cycle, I would bite their arm off. For me the only thing that would change that calculation would be if you're far enough into your 30s that the wait will push you past, say 38.

Hope that helps!

Thanks so much for the replies! Ahh I completely misunderstood then, I assumed planting 2 increased the chances. How do so many ivf ladies end up with multiples then?

I agree it is totally amazing. We’ve not actually been offered an nhs round im just presuming we may from the criteria. We can’t get an appt to even discuss options for 4 months. Hence why I worry about timescales. Ideally like to sort this by 35 which leaves about 12 months.

I’m certainly opening to travelling, what sort of costs are US clinics?

We paid $20k for 3 rounds of PGD + IVF. You should hopefully only need the one cycle though.

You should be eligible for 3 rounds based on what you've said. It is SLOW though. I would say the sooner you can get an appointment with your local genetics team to write the referral to wherever you'll be having treatment, the better. Could you call to see if they have any cancellations to avoid the 4 month wait?

Once we got referred we managed to get our initial appointment through very quickly, but are now looking at a 4 month wait before the next appointment and then around another 4 months after that before starting. It feels like such a long time to wait but it's the right decision for us right now. I have a translocation so they don't need to build probes, we were told that for specific conditions where they need to build targeted probes the whole process could be longer so more like a year.

We're doing ours at Guy's (or at least our first cycle, I'm worried about all the bad things I've heard and may move if first cycle isn't successful) but I've heard really good things about CARE. I think only their Nottingham clinic do PGD, not sure how that location would work for you.

Good luck whatever you decide, I hope it all works out xx

Thanks again for the replies. I hate hate hate that we have to go through this. But I’m also aware that I’m posting on an infertility board so am grateful for my daughter, she is my world, but I just personally don’t think it’s fair to risk having another child who could be as she is, or even worse. I love her but I never wanted her to be like this. I worry every day what her future will be like & if she will ever be able to live independently etc.

I’ve spoke to the genetic counsellor again today who has been doing some digging for us. She thinks we would meet the NHS criteria (since we are both carriers, and have an affected child who inherited faulty genes from both of us). We’re not overweight, don’t smoke, within the age limit etc.

She said we would be looking at 24 months realistically before starting treatment. We would have to go to Guys and this would be the first time for PGD on this particular gene there. I’m grateful it seems we are probably eligible. But I’m also selfishly thinking I want to do it sooner. That sounds awful saying on this board.

The appt in 4 months is a cancellation. The original appt was June!

Another option she suggested was try naturally, if fall pregnant get CVS at 11 weeks to see if affected & make a decision re termination if required. That sounds very emotional. The chance is 1 in 4 to be affected, so 3 in 4 unaffected. So technically the odds are good. But I can’t help feel this is irresponsible knowing the risk? What do other people usually do in this position? Try & hope for the best? Or be sensible and go straight to IVF?

The mythical chicken - which clinic did you attend?

We aren’t made of money of course, but also time is precious to us. I’m not sure I can live in the limbo for 2-3 years. Am I being selfish? What are the time frames for private ivf with pgd?

I was going to mention the trying naturally option, as you day it can involve some tough choices. I have a 50/50 condition so its not for me, if it was 25/75 I would definitely give it some serious thought - money, time and the stress of ivf can take it out of you.
There's a great FB for PGD IVF, have a search and apply - it's locked down so none of your friends can see you posting. Plenty of Americans too if you want more info on that

Planting 2 does increase your chance of pregnancy. People here are getting confused. If your chance of getting pregnant is 15 percent per embryo it would be 30 percent with 2, or 45 percent with three. That’s why ivf clinics in the UK put back 2 for over 38s and 3 for over 40s.

If your chance of getting pregnant is 15 percent per embryo it would be 30 percent with 2, or 45 percent with three. That’s why ivf clinics in the UK put back 2 for over 38s and 3 for over 40s.

This is incorrect. Transferring 2 embryos does not double pregnancy rates. For blastocyst transfer, pregnancy rates are similar for single and double embryo transfers. However, the risk of both miscarriage and multiple pregnancy (and all the associated risks of this) are much lower if a single embryo is transferred.

IVF clinics in the U.K. often put back more than one embryo in “older” women as the chance of them being chromosomally abnormal is much higher as is the likelihood of none of them implanting. Clinics therefore often transfer more than one to increase the chance that one of them implants, but even when they do this, transferring 2 still does not double the chance of success.

Cherries101, I have attached the HFEA's data comparing elective single embryo transfer (eSET) with double transfer (DET). They show quite clearly that what I said was accurate and that I am not in the least bit confused. (Actually, looking at the data more closely, I understated things a bit - double transfer is associated with a lower pregnancy rate for that cycle.)

Incidentally, 'planting' is not a term used in IVF. Embryos are transferred, and then they themselves either implant or don't.

See page 17 (Table 2). This is the report I was given as reference by the HFEA when i went to the fertility show. I was told quite clearly that for women my age, a DET was more successful than a eSET. The advice for eSET over DET only applies to women younger than 34 and those women under 37 who don’t have either egg quality / chromosonal / ovulatory disorders. They use pregnancy rates because the birth rates are old. This makes sense to me because the NICE guidelines for women my age are a double transfer too. ifqlive.blob.core.windows.net/umbraco-website/1169/multiple_births_report_2015.pdf

By no stretch of the imagination does that table show that transferring two results in double the chance of pregnancy (and three in triple the chance), which is what you said. It does show a statistically significant increase in pregnancy rates where two embryos are transferred at cleavage stage, as opposed to if they've developed to blastocyst stage (and, I'm not arguing with that thinking - I've had DET myself on days 2 and 3 because in the circumstances it made most sense to do that). But it's certainly not an increase on the scale you stated.

Can I just say I agree 100% with what Persipan has said

If your chance of getting pregnant is 15 percent per embryo it would be 30 percent with 2, or 45 percent with three. That’s why ivf clinics in the UK put back 2 for over 38s and 3 for over 40s.

Why don't they just put back 7 embryos, then the chance of success it over 100%?!

In all seriousness though, the success rates don't apply to OP. These stats almost exclusively represent those with infertility. The success rates for someone having IVF for genetic screening purposes when they have no fertility issues is going to be way higher than your average rates at any clinic.

The clinic I went to in London treats a lot of patients with genetic issues, and had a success rate of over 70% when we went. When they showed us the success rates for single or double ET there was a difference, but it was approximately 5% difference (so 70% vs 75%).

Wow, I seriously need to do some reading up on IVF if we do decide to go down this route. What worries me is the ‘success rates’ seem so low. Am I interpreting things wrong? I guess it’s a strange one as technically we’re not infertile?

Candy Melts - I hear you. It’s hard to know what route to take. If this was a dominant 50/50 condition I’d defo go straight to ivf.

I feel like the odds don’t sound THAT bad. Chances are - 25% affected. 50% unaffected but carrier. 25% unaffected. The odds are ‘more likely’ to be unaffected (75%) than affected

But despite the more favourably statistics for this genetic condition, our daughter still fell in the 25% chance of being affected :(

I’m finding it really hard to make a decision where to go with this. My husband said he would rather try naturally & be tested at 11 weeks, and surely we can’t be unlucky enough for another child to be affected. But of course we can, it’s out of our control.

Is there anyone else who’s been in this situation?

Just to clarify - transferring 2 does NOT result in as favourable statistics as implanting just 1 embryo??

The odds aren't that bad. There is certainly more chance of another child being unaffected than affected. But it's so hard to terminate a much wanted baby, and a lot of men don't feel the same about that as women do.

Seriously, ignore the published success rates though. They are measured in people who might have some serious fertility problems. I would get in touch with the main clinics that offer the screening and ask for their success rates only for people with no fertility problems and who are only having ivf because of genetics. Then compare those rates.

My understanding of that data is that transferring two embryos increases your chance of twins but does not increase your chance of a single birth, and may slightly reduce it - the reason I think is that one less strong embryo transferred can bring down the chance of the other succeeding.

I was told my best bet was serial single transfers until success and I think that stacks up.

Yes the stats are not terribly compelling - a large proportion of women undergoing IVF never have a live birth. No guarantees at all, this is a variable biological process, the minor differences between clinc success rates are likely just minor random fluctuations around an average figure. O

Have you been and talked though with a geneticist? You need to know the sensitivity of PGD for your condition before doing any of this, and honestly the IVF clinics may well not know these specialist details.

Apple read your latest posts and see you are in that process. Good luck whatever you decide

I haven't read the full thread and don't know if you'd consider this but I used reprofit in Czech Republic- we did have fertility problems and wanted to use screening to increase chances. I didn't need it in the end (only has two embryos) but the clinic is amazing and much much cheaper than treatment is most places

If I'm honest I don't think you would be allowed to transfer 2 for PGD anyway, you aren't for PGS anyway, the maximum limit for a PGS tested embryo is 1 due to success rates of a PGS tested embryo being much higher, clinics are targeted by the HFEA to keep multiple births to a minimum so are often only open to transferring 2 if a patient is older, has a history of loss or has poor quality embryos

That’s ok, I was just under the impression most people had 2 but I’m still learning & there is clearly lots to learn!

Out of curiosity, what sort of costs & timescales should I expect from private clinics?

It will vary between clinics but I would say around £800 for consultation and screening, £5,000 for the IVF cycle and medication, £6,000-£7,000 PGD fee for a single gene disorder and around £2,000 for the frozen embryos transfer with meds and HFEA fee. That's an average guess though