I’m in my second cycle of IVF with PGD for Fragile X and male factor, I have 50/50 odds of passing my bad chromosome and having my permutation expand into a full mutation. Unlike some families, mine has no history of Fragile X, developmental disabilities, autism, fertility problems or any other markers that could have clued us in to me being a carrier. We found out when DH’s geneticist decided to test me because of my crappy hormone levels while running DH’s MFI tests. I also have the unfortunate FXPOI that goes along with some premutation carriers so we don’t get a ton of embryos from each cycle. Because of that, we’re batching our embryos from two cycles so we can do PGD on them all at once – we’re paying out of pocket for IVF but our insurance will cover PGD so we need as many as possible to test. Two cycles is running us about $40,000.
We’re doing our IVF cycles back to back, our first cycle resulted in 4 frozen embryos and we’re hoping to get at least that many in our second. IVF with PGD is very different from traditional IVF – you need to make sure you pick a clinic and doctor that has TONS, not some, but TONS of experience with PGD and the biopsy process. You do not want to be the client they use to get some experience. How many PGD cases do they do a year? How many biopsies? Do they biopsy day 3 or day 5? Is it done in house or do they use a traveling embryologist? How much experience do their embryologists have, they need a certain number of biopsies to be qualified and you want yours to be well over that number. Are they aware that ICSI is necessary to prevent genetic contamination for PGD? What freezing process do they use and what is their success rate for FET? You also need to pick a genetics lab with excellent statistics for results to build your probe, you don’t want inconclusives.
I’m in several PGD/genetics groups and from what I’ve seen it does often take several cycles to get your healthy embryos, even if you have no fertility problems. IVF recruits eggs your body wouldn’t otherwise use that month so you end up pulling eggs with other issues like chromosomal abnormalities as well. You may want to add on aCGH testing as well, single gene PGD only looks for your mutation and doesn’t find issues like trisomy 21. This is an extra expense but I think Darling Husband and I are going to add it on, I’m only 27 but they still see a number of abnormal chromosomes in my age range. Factor in that some embryos will be affected by the disease and there are some women in my support group who are on their 10<sup>th</sup> cycle! Others get lucky on the first try, I think it all depends on the person. That said, Darling Husband and I can only afford two cycles so we’re putting all our eggs in this basket, hoping we get some normals to transfer, and hoping we’re some of the lucky ones who get our take home baby from our first FET.
As for family, I would have preferred not to share our infertility journey with them but we needed their saliva to build the probe. They’ve been supportive but its very uncomfortable for me to have them asking over and over about our progress and what we’re doing now. The process takes a long time, you need to pick a clinic, go through all your precycle testing, it takes on average about 6-8 weeks to build a probe depending on the genetics lab, and then you have the cycles themselves. Getting our insurance to approve our PGD coverage also took forever. You’re going to be injecting a lot of hormones into your body, I do 4 shots a day for my cycle, and getting transvaginal ultrasounds every other day so it can be a lot to deal with. For me, my family’s repeated questions feel intrusive and annoying even though I know that’s not their intention.
I will also say that you should seriously consider doing acupuncture before and during your IVF cycles. I started off with IUIs and acupuncture dramatically improved my results each cycle. First IUI was 1 follicle, second was 7 follies, and first IVF was 14 follies which yielded 11 eggs that turned into 4 day 5 embryos. I was told I’d never make more than 3 so we are over the moon. This also means I had several months of acupuncture under my belt before we got to the IVF process. Acupuncture also helps balance your hormones so I don’t feel like a crazy PMS lady during my IVF cycles and it helped a ton with my recovery from my egg retrieval. I go once a week with an extra appointment before each egg retrieval and I will go for extra appointments before and after my FET.
Sorry this is such a novel, IVF with PGD is a really unique process and it took me a long time figure out what was important and what questions I needed to ask. I hope you have lots of luck when you’re ready to try 🙂
ETA: I don’t know how old you are, but the younger you start the better. The younger you are, the more eggs you’ll make, the less chromosomally abnormal eggs you’ll have, and the better your chances are. You can always do your IVF now and keep your embryos frozen until you’re ready to transfer.