Put to the Test: Making Decisions During IVF
While walking down the road that is infertility, there are so many choices along the way. When should we seek medical help? How do we know if we’re ready for IVF? What can we afford? It’s hard to know what choices will be right for you- and, since no two couples are on the same journey, no two paths are exactly alike.
Jenna Williams
Put to the Test: Making Decisions During IVF
My husband and I have made many choices over the past year of fertility treatments. I am not the best at decision-making- my family knows I take a while to settle on small things, like what Netflix show to start or what to order for dinner, as well as large things, like starting IVF.
Some of our biggest dilemmas lately have been centered around IVF tests with a whole lotta letters- CCS/PGS/PGT-A, ERA- could there be any more acronyms?! As we navigated these decisions, I asked a lot of questions- to my doctors, to other women in the infertility community, and to myself. As I learned about each of these tests and the choices we had, I also learned more about myself in the process.
CCS... PGT-A... PGS - What’s the Difference?!
You can google the scientific details (obviously, I am not a doctor!) but CCS stands for comprehensive chromosomal screening which is also commonly known as preimplantation genetic testing for aneuploidy, or PGT-A. Both are also often referred to as PGS, or preimplantation genetic screening. Basically, these are all performed by taking a tiny biopsy from an embryo that has made it to the blastocyst stage and sending it off for testing, which usually takes about two weeks.
The results that come back show whether or not your embryo(s) have the correct number of chromosomes to be compatible with life. Typically, these tests are recommended for women 35 and older, as they can experience more chromosome errors, as well as women who have had previous IVF cycles fail or have a history of miscarriage.
When we filled out our IVF consent forms, I asked a lot of questions about what our clinic calls CCS testing. Earlier this year, we had a miscarriage at 8 weeks following an IUI and if you’ve had a miscarriage as well, you know exactly how heartbreaking it is. The absolute last thing I wanted was to experience this physical and emotional pain again.
It’s widely estimated that about 70-75% of early miscarriages are caused by chromosomal abnormalities.
CCS/PGT-A/PGS testing identifies chromosomal abnormalities, so you don’t transfer an embryo you would inevitably end up miscarrying. Because I fell into the “35 and older” category and I had experienced a miscarriage, we knew CCS testing was the right choice for us.
It did come at an added cost of several thousand dollars but ultimately, we decided it was worth it to reduce the chance of losing another baby. I could absolutely miscarry again for other reasons, but at least we would know our embryo was chromosomally normal and compatible with life. We ended up doing two IVF stim cycles that resulted in three blastocysts sent for CCS testing. Of the three, only one was normal. Had we not tested and just transferred, there was a high probability that if I got pregnant, I would have miscarried.
Along the way, I realized just how risk averse I have become since starting IVF...
in my 20’s and early-to-mid 30’s, I was the total opposite! I was very spontaneous- I worried less and took more chances. If something didn’t go my way, there were many years stretching out in front of me to try again. The older I get, and the more we go through to have a baby, the less willing I am to take a risk. While there are no guarantees, my newly cautious nature wanted to do everything in our power to set us up for success, which led us to choose chromosomal testing.
ERA - not the Equal Rights Amendment!
I recently watched the Hulu show “Mrs. America” about the movement to ratify the Equal Rights Amendment, so when I heard the term, this was my first thought! Turns out it also refers to an endometrial receptivity analysis- a test performed on a small sample of your lining to determine which day would be best to transfer a frozen embryo. The sample is sent out for testing, which typically takes about two weeks.
The results that come back show whether you are receptive to an embryo in the “normal” window, or if you fall outside that window as pre- or post-receptive. If you are receptive, an embryo can be transferred using the same timing and schedule as your ERA cycle. If you are pre- or post-receptive, your medication is adjusted, and the transfer timed according to your personalized window of receptivity.
Typically, this test is recommended for women who have one or more failed frozen embryo transfers, but lately I’ve noticed more women are choosing to do an ERA before ever doing a transfer. When we found out we had one chromosomally normal embryo, I assumed we’d move straight to a transfer. But, about this time, I noticed dozens of women in the Instagram infertility community prepping for and doing ERA’s. I thought, hmm...I’m going to look into this! I reached out to my doctor as well as several of these women to learn more about the procedure and determine if it was right for us.
The downside of doing an ERA is the added cost (again, several thousand dollars) along with extending the timeline for your transfer (the thing you’re really excited about!) by six to eight weeks. I can personally say that while this seems like no big deal to those outside of the infertility community, when you’re this close to your baby, you know six to eight weeks feels like forever. For me, making a decision about the ERA was harder than making the decision about chromosomal testing- I was much more emotional about it and went back and forth a lot.
Ultimately, we decided to do an ERA because of our low number (one) of genetically normal embryos. The way my husband and I discussed it was that the ERA is like an insurance policy- you spend a few thousand dollars to protect your much larger investment (in our case, a $20,000 embryo.) Again, our transfer could fail for other reasons, but at least we would know our timing was right and rule that out as a possibility.
Along the way, I talked to many women online who had done an ERA and gotten results outside the “normal” window. I thought, “Many things about our journey to have a baby have not been normal, so what if this is another one where I fall outside the typical pattern?” I’ve learned that I don’t want to go through life with any regrets- I don’t want to look back and wonder, “what if?” Similar to our decision with chromosomal testing, I realized I was less willing to take a risk and more comfortable with information and data. In the past, I would not have described myself as an analytical person, but since beginning IVF I’ve read academic white papers, skimmed clinical studies, and calculated statistics like never before! For us, an ERA prior to transfer was the right decision.
One Last Thing
Our choices about chromosomal testing and an ERA may not be the same as your choices, and that is absolutely okay! No two couples are on the exact same journey, so no two paths are exactly alike- what is right for me may not be right for you. When making decisions about testing during IVF, here is what I did:
Asked a lot of questions of my doctor/reproductive endocrinologist
Reached out to other women in the infertility community on Instagram and Facebook who had made these decisions and asked for their experiences
Processed our options through introspective time alone as well as conversations with my husband to discuss our unique situation, personalities, and goals
While the destination was making a decision about doing or not doing these tests, along the way I found out the journey was the real ride, much like infertility and life itself!
Medical Disclaimer:
The information provided in this blog is intended for general informational purposes only and should not be considered as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your healthcare provider or qualified medical professional with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read in this blog.
