PGS is a serious decision you will have to make when going through IVF

PGS testing.This is something I honestly didn't hear much about when we did our first IVF cycle. This time, it seems to be everywhere.

Preimplantation genetic screening (PGS) for aneuploidy is a powerful genetic test that may be performed on embryos during IVF treatment to screen for numerical chromosomal abnormalities. PGS is performed on a small embryo biopsy prior to transfer and identifies which embryos are chromosomally normal.

Last time they recommended Cam and I get tested for cystic fibrosis. Since neither of us are carriers, that was all the genetic testing they were concerned with. It was a simple blood draw before we did IVF. This time, we were asked if we were wanting to do any other genetic testing. We had the option to have PGS and we had to sign a paper saying that we were not wanting any other testing done on our embryos. It could be that we are a couple years older (I'm still in my twenties though) or that it is more mainstream now.

PGS is a serious decision you will have to make when going through IVF. If, like us, you believe that all life is sacred, you have to approach the PGS testing from this perspective: will the results make any difference in the end if I use the embryos or not? For us, the answer was no.

"Before I formed you in the womb I knew you, before you were born I set you apart; I appointed you as a prophet to the nations."Jeremiah 1:5

We couldn't just create these lives and then discard the ones that were not perfection. I understand the there is a LOT of money and time involved in the process. The argument for being financially responsible is out there. I get it. However, this test costs about $5k. In my book, that $5k could go a long way toward another round of infertility treatments, etc. However, this can open you up to spending way more money than you would have, so that argument almost negates its self.

As I said, PGS is a big thing right now. Lots of ppl ask about PGD/PGS on the support groups I am a part of. One of the ladies found this article and posted it. It is a very concise list of pros and cons.

READ THE ARTICLE HERE

After reading the article, I am even more convinced that we came to the right conclusion to not do PGS testing. We are under 35 with no known issues beyond a non-genetic male factor fertility issue.

Research has shown that taking embryos out to day 5 blastocyst (most dr.'s -ours included - do day 5 transfers) indicates a genetically strong embryo. I can't help but think that the few cells they take to test could be normal, but cells left behind could still be abnormal in that embryo. If you choose to do this testing, you are paying for something that's not 100% accurate. (as stated in the article) 

I have read stories of people who are devastated because they get this testing done on their three embryos and two come out with a flaw and one doesn't make it through the process. They end up with nothing to transfer. They have lost one baby and chosen to discard two. To me, that is unthinkable and (in my opinion) shows little regard for human life. 

"You made all the delicate, inner parts of my body and knit me together in my mother's womb."~Psalm, 139:13

To me, no matter how the sperm met the egg, God allowed the life to be created. ALL life, even life that begins in a lab, is created by God. Yes, it could be devastating to go through IVF only to end up with a sick or disabled child, but that is what God gave you. It is no less devastating when the life is created naturally. However, I know many down syndrome children that have been an incredible blessing to their parents. I know children that were given a 0% chance of living outside the womb that are alive and thriving. If they were created through IVF, and their parents had chosen to do PGS, they may not have had a chance to meet this incredible person. 

"My thoughts are nothing like your thoughts," says the LORD. "And my ways are far beyond anything you could imagine."~Isaiah 55:8

From what I have seen, many couples choose to do this testing in hopes that it increases their chances of pregnancy and decrease the chance of miscarriage. HOWEVER, based on what I have read and the posts from IVF mamas I have seen, this is not the case. "Never implanted, and didn't work" seem to be the case many times. I feel that having this test, spending the extra $ ($5k is on the cheap side. doing testing on 3+ makes it incredibly expensive) sets couples up to think that they are guaranteed a baby. The heartache of having a 'perfect' embryo not make it and feeling there is nothing else that can be done would be incredible. 

I believe it is for this reason that many RE's I have read about are actually encouraging couples with little to no risk factors to not get the testing. For one thing, the testing makes a fresh transfer impossible. You would have to do a frozen transfer (FET). With the 20% chance of destroying the embryo in the testing process and the 35% chance they won't survive the freezing and thawing process, your chances of a successful IVF have significantly gone down.

Especially if you are dealing with very few embryos, this is something to consider. We had 3 embryos when we did it the first time, and two of them didn't make it to day 5. We only had one embryo that we could have done testing on and frozen for an FET. We got pregnant with our perfect son with that one embryo. Had we done testing, there would have been a 55% chance that he would not have survived the process. We would have been taking a huge risk with the life of our baby. 

IVF success rates have increased in recent years, from the 10% success rates in the 80s. However, it is still not guaranteed and the success rates are still (to me) too low to add more risk factors. 

"Women with top chances of IVF success have per-cycle success rates of 40% or higher, while the majority of women have per-cycle success rates of 20-35%. Having this perspective may help you think about trying more than one cycle, and feel less discouraged if the first one doesn't work." ~Resolve

While we are on the subject of statistics, lets talk accuracy. As stated in the article above, the test does not mean that you are guaranteed a healthy child. In the same way you can get a false 'positive' you could also get a false 'negative.' You could be tossing a perfectly healthy embryo that has a good chance of surviving based on a flawed test. Yes, the chances of that are probably low, but it happens.The new protocol is to do PGS (day 5) not PGD (day 3) testing and to only take trophectoderm cells (cells that should only be the placenta). They don't take the inner cell mass which becomes the embryo. As they are testing only the placenta, and not the actual baby that makes me question how much it reflects the baby. Also, they could (in theory) take an abnormal sample that could then divide off to be the placenta, not the embryo. 

As I said, there are too many ways the test could be wrong, and, while I am choosing to use IVF to help build our family, I really want to leave as much of it to God as possible. 

Here is where I * MIGHT* advocate for PGS testing:IF you are older, have known genetic issues or had multiple unexplained miscarriages, you could get this testing so you know exactly what you are dealing with. (while considering the risks above) 

HOWEVER, As I said before, our decision was based on "would this change our minds and would we use this embryo?" our answer is no, and yes. We would approach the pregnancy as high risk from the beginning and take all precautions, etc. to help ensure a successful pregnancy. If God has this life for us, we would do everything we could to take care of it.

With these same principles in mind, we did not get any testing done while I was pregnant with H, and we plan to do the same with any future pregnancies. We will get ultrasounds, and if all looks normal, we will proceed as if everything is fine. If there seems to be a legitimate concern and more testing is needed, we may get it as a diagnosis, but only so we know how to prepare for and take better care of our baby. We absolutely will NOT terminate a pregnancy based on any tests. If we have preterm labor and the baby does not survive, at least we know that we did everything we could for this life. I would be sad, but I would be able to live with a clear conscience. 

This has been a bit of a heavier post. I have tried to include links to the info I have talked about. Some of my sources are private. Some of my information is gleaned from reading extensively on message boards and Facebook groups about the subject. Most of this post is opinion, and from my very specific Christ-centered worldview. I will not apologize for this. This blog is for me. Yes, I hope that others who are experiencing infertility are able to get help from it, but in the end, I am writing it as a way to cope with my infertility and to document the process.

Having said that, as with all things, I am not telling you what you should do. I am gathering up facts and opinions and telling you what we have done with them in our own journey. Approaching IVF from a christian perspective is different. Some of the decisions and issues you will face that are not hard decisions for others will be extremely difficult for you. 

I am writing this blog and sharing my story not to tell you what to do but to provide a resource that might be counter-cultural and help you to make your decisions.