IVF without PGS

Knottie1464178146

Planning for IVF next month, PGS seems to be their standard practice, however i have decided against it due to some moral/religious concerns. Wondering about others success vs lack of success without PGS. 

murph145

Depends on your age.   Over 35 I would definitely recommend it but since you're against it not really much to tell you.   All I know from my experience is that PGS was very helpful. 

Wife is 39 and we had 14 retrieved,  10 fertilize,  4 make it to day 5 blastocyst and after PGS only 1 normal embryo.   We did a FET and are now 15 weeks pregnant with a healthy girl.   

PGS saved us headache of possibly transferring 3 bad embryos that would have ended in MC.  I would always recommend PGS to anyone that has the money or over 35.

Tulips29

I'd agree with PP. My RE recommends PGS for anyone over 35. My first ever IVF cycle, I had 19 eggs retrieved and ended up with 1 normal embryo in the end after PGS testing. I had a 2nd embryo re-tested that was unconfirmed after the first PGS test and it came back as normal second time around. The first normal embryo resulted in a successful FET cycle and the second one (re-tested one) did not take. I'm not sure I'd account this to PGS testing as there could be a number of factors that affected implantation. They are also graded based on their quality, so the worse quality one might have not implanted for that reason alone. I'm not sure if you feel comfortable sharing your reasons for not testing, but I'm personally all for it to reduce MC risks. 

nnema

" deep lurker"
Going into IVF, I had also decided against PGS testing. My reason is simple, I rather have a non implantation or MC than "discard" my embryo due to some "abnormalities".  I'm 36 so my RE was strongly recommending that we consider doing one; however, we only had 1 embryo survived so decision became moot at that point. "TW" I had FET of our one and only NON-PGS tested embryo and had my healthy daughter 6 weeks ago! Also, except for the fetal echo, I didn't do any of the prenatal testings! 
Goodluck!

suzycupcake

We did PGS. At 34, we had 7 “aneuploid” embryos. Pretty much unheard of at my age and no explanation for it. We went ahead and transferred one, non mosaic, due to moral comcerns. We have a healthy boy. 

caitiemae

@suzycupcake If I understand you correctly, did your embryo with an "abnormal" amount of chromosomes actually end up resulting in a completely healthy baby?  I still am a bit weary in how accurate PGS testing is.  I'm glad my new doctordidn't even bring it up in my consultation.  

sue2019

No embryo with abnormal number of chromosomes will survive. Borderline embryos have other abnormalities. Probably the results were not accurate- there’s always a chance of error. 

suzycupcake

@caitiemae Not sure who the knottie person is, but they are 100% wrong. There are certain trisomies that won't survive, but not all. The results will never be 100% accurate because they cannot biopsy and test the inner cell mass--the part that becomes the actual baby. They can only test cells of the part of the embryo that becomes the placenta, which we've known for 30 years, we can place it under the microscope and see islands of chromosome abnormalities. They just talked about this at the most recent convention of experts. 

And yes, our embryo with an abnormal # of chromosomes, non mosaic, is completely healthy. 

murph145

@suzycupcake please explain the chromosome issue of your successful transplant?   Im assuming it must have been on the "X" or "Y" portion?  No doctor would knowingly implant any other aneuploid embryo it's against code and acceptable doctor conduct.   Just want the transparent facts so no one gets confused please.   Thanks

somewhereinnyc

@suzycupcake So this mosaic you refer to below is not what you transferred?

caitiemae

@suzycupcake wow, thanks for the info! Congrats on the birth of your little boy!  Did they confirm that he did indeed have a trisomy after birth? 

I remember seeing this post on the bump before where someone retested their embryos and got very different results.

https://forums.thebump.com/discussion/12707282/pgs-results-are-not-reliable-word-of-caution-own-experience-literature

Doctors need to let people know testing is not 100% before pushing it.  I think there's a place for it if you're someone with recurrent miscarriages or you have a ton of embryos that you won't be able to use anyways.  It's sad to think though that there are women with failed IVF cycles who may have had the chance to have a healthy pregnancy because of potentially false abnormal results.  

suzycupcake

@somewhereinnyc Our XYY was not mosaic at the time of PGS. Eta; You're quoting me speaking to someone who already knows my journey so it's known that we received the initial report with no mosaicism disclosed. We received the report with mosaicism disclosed but there was an admin error where they changed our XYY to XXY. They reissued a mosaicism report with the correction. I wasn't saying that our XYY is mosaic. I'm happy to pm you the Cooper Genomics report with my personal info redacted or you can search further through my history when I was over at TTGP to see the explanation of what happened.  

@caitiemae We have not given birth yet. I won't be allowing CVS or an Amnio during pregnancy. We might have him tested after birth but not sure yet. Well, no test is 100% accurate. Maybe they figure that should be a given in everyones' mind. Both of our previous RE and our current RE were completely surprised by our decision to transfer and by the health of our baby. I have heard that testing does help those with RPL to cut down on any chromosome patterns that are known to cause mc so that's a good thing since mc is harmful to the Mother in more ways than one.

You are correct that two different labs can differ drastically from each other. It's just the nature of biopsy. This same thing happened with my Dad's tumor samples in 2017. If you're testing from different parts, you'll get different results. It's strange that it happens, but it does. Plus though, embryos have the ability to correct themselves in the process so that's pretty cool too. Hey, there is an article I read awhile back that might interest you about aneuploid embryos. To be completely honest, I can't say that I wouldn't have been picky and choosy if we didn't receive a 100% aneuploidy rate.

TW***** there are pictures of babies https://www.thecut.com/2017/09/ivf-abnormal-embryos-new-last-chance.html

suzycupcake

murph145 said:

@suzycupcake please explain the chromosome issue of your successful transplant?   Im assuming it must have been on the "X" or "Y" portion?  No doctor would knowingly implant any other aneuploid embryo it's against code and acceptable doctor conduct.   Just want the transparent facts so no one gets confused please.   Thanks

Murph, hiii! Not true. You can read the article I posted right above this. There are many Doctors who would and who do, mine included, even beyond an extra Y chromosome, which by the way is still a chromosome problem.

You can contact Vicken Sahakian at Pacific Fertility Center here in Los Angeles. He has a 60% success rate and he will tell you that he's willing to transfer Aneuploid embryos and can give you a list of all of his colleagues he has known in the last 20 years who will too. 

Obviously it's a huge and very personal decision and I'm not advocating for either way. I only shared my experience and shared facts that I learned along the way. Hope you and your wife are doing well. It's good to see you!

somewhereinnyc

@suzycupcake ok so after they fixed the mistake, final result aneuploid or mosaic?

we just had a chemical pregnancy on a fresh cycle and have gone back and forth about pgs on our frozens. I get how a lab could make a mistake. It’s discomforting tho. Hard decisions to make..

suzycupcake

@somewhereinnyc I'm confused by your question. It was never mosaic. Here's what happened:

1. We got results of all embryos but no mosaicism was disclosed. One embryo on the list was XYY (nothing to do with mosaicism yet because we don't know which are and which aren't). Your provider has to check a box on the form for the lab to disclose mosaicism on the report. We requested and signed consents. 
2. Lab re-issued results of all embryos along with which are mosaic and which aren't. One embryo on the list was changed from XYY to XXY (this is the same embryo on the initial report because there are coded numbers so you can see which are which) (this embryo also did not come back mosaic on the 2nd report). I contacted them freaking out because how can it change from XYY to XXY. They assured me it was an administrative error.
3. Lab re-issued the 2nd report with the correction back to XYY, still not mosaic.

TL; DR--it was never mosaic, always resulted aneuploid. 

Does that make more sense?

We only had one mosaic on our report and it was a low level trisomy 13 yet is one of our A+ in appearance. It's insane to me how appearance can be so different from biopsy. The trisomy 13 is a girl. There was one or two embryos with a piece that was mosaic, but there were other trisomies/monosomies along with it. For example, it could be that the q arm of a piece of chromosome 5 was mosaic, but there was also an 80% trisomy result for chromosome 9. They would only consider that mosaic if there was no +9 along with it. When I say 80% trisomy results, it's 80% of the 5-6 cells they biopsied out of the over 100 in the entire embryo, again only being able to biopsy from the part that becomes the placenta. I sat on the phone with a genetics counselor from Cooper Genomics for an hour and a half and typed everything she said verbatim. We had a ton of questions. 

It is a really tough decision and I'm so sorry for your loss. We are no strangers to loss either, but I can imagine it's a different kind of cruel happening during IVF. For us, it was during IUI. Hugs  

zamoraspin

To go back to the OP's original question... it is certainly very possible to have a healthy pregnancy without PGS testing embryos. IVF was around for several decades before PGS became available. There are certain patient populations that benefit disproportionately from PGS, especially women over 35. I've always thought IVF IQ had really good articles on the pros and cons of PGS, although if you are morally opposed, it may not be worth finding out more. https://www.fertilityiq.com/pgs-and-ccs-genetic-testing

@suzycupcake I have mentioned this before but I guess every time I see that article from The Cut I'm going to mention it, the article uses terminology in a way that is not consistent in the article -- mosaic and abnormal are used interchangeably and most clinicians would say that the genetic health of an embryo is a spectrum so precision is important. Further, the results discussed are anecdotal, they reflect a very tiny sample size. I think the results are meaningful but I also think the issue needs further study. I also think when you disclose you transferred an aneuploid embryo you do need to disclose the genetic issue was sex chromosome related. Again, genetic conditions are a spectrum, and also embryos maybe very disordered or have only a couple of disordered cells, another spectrum. There are conditions that are survivable and not painful to a child, and there are conditions that, if known, are truly nightmares and I do not think clinicians treat them all the same or have the same willingness to transfer. eta Also, I would say you used PGS in exactly the way it was intended - as a prioritization tool. You had other embryos you could have transferred but you transferred the one that had the best likelihood of success and a healthy child. 

@somewhereinnyc I think it's generally a very personal decision to do PGS. How many embryos did you get in your cycle? Did you do a 3 or 5 day transfer? How old are you? *TW in spoiler

For us PGS was the only reason we did IVF, I had four first trimester mc's from spontaneous pregnancies, and we know one was due to a trisomy. I was 36 at my egg retrieval, we got an unexpectedly high number of PGS normal, and I'm 12w with our first transfer of a normal embryo. We also did NIPT once I was pregnant and got good results. 

somewhereinnyc

@suzycupcake ok got it. Oh man. Yikes. Thank you for sharing this.

Yah it sucked but the silver lining is that it’s a chemical pregnancy so it was very early and I’m hoping it resolves on its own (no drugs or procedures or drawn out process) and we can transfer one of our frozens in a modified natural cycle (no shots and no dreaded PIO) next month. We also have insurance coverage for 2 more transfers. This was really rough but I’ve got lots to be thankful for.. including my husband and support from you ladies on this Valentine’s Day 💖💔. 

I do not think I will do PGS on the next couple transfers- especially after hearing these stories. I also learned it’s like 6k out of pocket for how many I have frozen at Cornell (!)

somewhereinnyc

@zamora_spin 6 blastocysts (5 ready on day 5 and 1 ready on day 6.. my RE says day 5 blastocysts have a higher chance). I only had 10 eggs retrieved w the lowish dose of 150 fsh.. I was freaking out when I only had like 7-8 big follicles on trigger day so I most definitely do not expect to have 6 blastocysts. The lower number of follicles also affected my decision to not pgs at the time. I’m 33 and was also advised that pgs wouldn’t really improve my chances. So I didn’t do it 🤷‍♀️

zamoraspin

@somewhereinnyc I’m sorry you experienced the CP. I think given your age and that you already have the embryos on ice it makes sense to try another transfer as is. That is just my opinion of course. Good luck, I hope it works out for you on your next transfer!

cashewchicken

Like what many of the pp said, PGS is often recommended for older women. For those under 35, it’s not a standard practice, at least that’s the impression I got from joining the infertility forum here. Even if you are over 35, not doing PGS doesn’t mean you won’t have any success. It just might take you longer. 
@murph145  I’ve read somewhere about a doctor transferring only aneuploid embryos with a single lethal chromosomal error. In this case, if the PGS testing is accurate, then the embryo won’t grow and will result in failed implantation or early miscarriage.

mbradfo2

I was 33 when we did our retrieval (freeze-all, no fresh transfer - my clinic is moving away from them if they can get embies to freeze since FET seems to be giving them much higher success rates). I asked my doctor point-blank if he thought pgs testing would be helpful, especially since I had a prior miscarriage that was likely due to chromosomal abnormality. He said it would not improve my chances and the science is still very much in its infancy.

We ended up with two day 6 blasts frozen, transferred both untested and -tw- both implanted but one showed the same signs of abnormality as my m/c. It stopped developing early. The other is a bouncing 10 month old girl. 

TLDR -- PGS is still very new, very pricey and not likely to make a great difference in success. Having a m/c or chemical is unfortunately common and usually does not mean that you won't go on to a successful pregnancy later. I think a chemical particularly doesn't signal that there was anything wrong with the embryo -- you might just need to change up your protocol if it happens again, maybe you need more hormones or less, etc. 

somewhereinnyc

@mbradfo2 @zamora_spin thank you ladies for chiming in w experience. After trying for over a year, this is my first pregnancy (and it was through ivf). There’s a part of me that’s terrified I’ll never have a child after this CP and a partner of me briefly thought pgs would be the answer. I’m trying to be rational. But it hasn’t helped that I still haven’t got my period and then was told I need to wait a whole nother cycle for an FET bc this was a fresh transfer. Sorry for thread hijacking. 

mbradfo2

@somewhereinnyc
My first BFP also ended in a m/c so I totally understand how you feel -- thinking this is your time and then a bomb dropping on you. It took me 8 months to recover and move forward with IVF (it was a surprise natural BFP). Be kind to yourself. What feels like the end is often the beginning

Knottie1464178146

Thanks for the input! Im 33, hoping that being under 35 will give me some good chances without PGS

Tulips29

I'll chime in again with some fresh perspective from my second PGS testing of new embryos. I just turned 35 last month and did a retrieval cycle. We sent off 4 normal embryos for testing a few weeks ago and the results are as follows:
2 normal embryos (recommended for transfer)
1 mosaic embryo with possible trisomy 18 (proceed with caution type embryo)
1 abnormal embryo with missing chromosome 16 (not recommended for transfer)

Out of the 2 normal ones, 1 looks good enough and 1 looks pretty bad and has about a 20% chance of implanting. The mosaic embryo has about 43% chance of it being abnormal and resulting in trisomy 18. Googling what trisomy 18 means led to scary information (such as Edwards disease, physical/intellectual defects, miscarriage, baby not living to 1st birthday, etc). We decided the risk is probably not worth it. The abnormal embryo we won't be transferring either. The normal one that looks bad and has a 20% implantation chance is also a big gamble. So in the end, we're really left with 1 viable embryo, although it's also not a guarantee it will implant. Now, if we didn't do PGS testing, we'd end up with a 3 out of 4 chance of miscarriage, birth defects, not implanting, etc. Both DH and I agreed that it's a huge emotional toll to begin with, plus the end result might not have led to good outcomes either 3 out of those 4 times (or even all 4 altogether). Although I wish we had more normal embryos, I'm glad we went forward with PGS testing to give us a better idea of what we have on hand. 

mackorori

To echo what others have said, the decision to use PGS is typically driven by age and RPL issues. To offer our story...we decided to do IVF/PGS being 42 and having two MMC, one known due to trisomy. We did two IVF cycles with one normal embryo and my clinic will not transfer abnormal embryos, including mosaics. Before we started the FET cycle, we had a natural PG and another loss for trisomy. 

We took into consideration the concerns about its accuracy, but with our history and particularly after the most recent loss it was absolutely the best decision for us. But it's a very personal decision and I'm sure your RE will go through the options and pros-cons to help you decide what works best for you.  

Tulips29

@mackorori I'm sorry about your losses, it's never easy . If you don't mind me asking, what trisomy was involved that you mention? I ask because one of our embryos might have trisomy 18, but RE says it's a "proceed with caution" embryo. I'd really like to avoid a possible m/c if I can, but the fact that he's willing to transfer it if we request is also a bit confusing. 

bakerstreetboys

@Tulips29
**TW
With my first two IVF cycles and transfers, at age 40, we didn't do PGS.  With our second transfer, I got pregnant; we thought everything was going well until we had the NIPT testing done.  The baby had Trisomy 18 and we had to make the most difficult decision of our lives.  
We will be starting another round next month, and though we seriously considered doing PGS this time, we won't be.  It's a very personal decision, and hopefully your RE can help by answering all of your questions.  Best of luck to you.  

zamoraspin

@Tulips29 Maybe you could talk to a genetic counselor about the mosaic? What is the reason for the lesser prognosis for your second normal embryo? Is it graded poorly? I would think if it was strong enough to biopsy and freeze and is also euploid the chances wouldn't be that low, but I'm not an expert of course. Not sure if he's still around but there was an embryologist on this board for a while. Are you out there @embryoman? 

mackorori

@tulips29 for my losses I had trisomy 9 and 21.  With the embryos, I didn't ask for specifics, but I know they were varied and some had multiple trisomies or were missing chromosomes. I don't believe any were mosaic. As I mentioned, my clinic will not transfer abnormal embryos, so I'm not sure why some do. Perhaps it's a matter of leaving it to your choice once you have the knowledge. I personally would not transfer an abnormal embryo because by doing the testing we are trying to prevent our specific problem. But every circumstance is different and others will feel differently and make a decision that's best for them.  One thing I suggest if you are considering using the embryo is to talk to a genetic counselor. The unfortunate reality is that confirmed trisomies often do not have a good prognosis, even if the pregnancies do make it to term, so the counselor can explain the range of possibilities so you can make an informed decision.

Tulips29

@bakerstreetboys Oh gosh, I'm so sorry! I can't imagine making such a decision! 

@zamora_spin so the poor prognosis "good" embryo is graded as 1BB, which is really low. My other good one is 4BB. Hence the reason my RE is saying it's likely not going to stick, but there's still a 20% chance. 

@mackorori My RE did say trisomy 18, 21 (and maybe 9) are the most common that don't end in good outcomes if implanted. He's basically telling me not to use that embryo, I'm just puzzled why they would say I can transfer if I want to. DH and I decided we won't be using it.

mackorori

@tulips29 I think they allow it with mosaic because some of the cells are normal and some aren’t, so then if you’re willing to take the chance they will transfer it. My clinic won’t allow for mosaics to be transferred anyway, but given our history we probably wouldn’t have wanted to try that either. It’s so hard.

sue2019

Hi! I completely agree with all. Genetic testing might not be 💯 accurate, but will decrease chances of miscarriages or abnormal pregnancies. The emotional load you go thorough is just not worth it if can be avoided. I am 37, and decided to do PGS. At the end, we only had one viable embryo (very good quality, 50-60% chance)- all others were not viable. I was disappointed pointed at first, and questioned my decision to do PGS ( as I have read in this blog that people sometimes have abnormal results on PGS that are an error)- but the idea of possibly going through several miscarriages or having to terminate a pregnancy due to abnormalities wasn’t just devastating to me. I’m getting ready for my transfer (on estrace and Lupron now), possibly for mid March. Good luck to all!