The following was written by Mike in March.
In January we found out that Lex and I are both CF carriers. But thanks to the miracles of modern medicine, there is still hope; IVF with PGD, or preimplantation genetic diagnosis. Dr. K went over some of the basics. Essentially, we go through a normal IVF process, but instead of transferring 1 or 2 embryos once they reach day 5 on the petri dish, they biopsy the embryos, and freeze them down. Then, during the next cycle, they thaw and transfer only embryos which are not affected. As an added bonus they can also check the embryos to make sure they have the correct number of chromosomes, a.k.a. preimplantation genetic screening, to minimize the chances of miscarriage once we’re pregnant. Our other options were also presented, including continuing the normal progression of treatment and if we become pregnant with an affected fetus either accept that or undergo an elective abortion. This did not seem a palatable option to us so we decided to pursue IVF with PGD.
However, just to add insult to injury, while researching the procedure, we learned that while our RE takes our insurance, the center in which she works does not (go figure). And the cost to continue with her simply became prohibitive. Lex was devastated. She felt like Dr. K would be the one to help us get pregnant. However, we needed to press on. Fortunately, we were able to score an appointment with Dr. G, who does accept our insurance, later in the month.
This prompted more blood draws, more tests, and the beginning of a seemingly never ending struggle with the insurance company. While we are fortunate enough to have full coverage for up to three cycles of IVF, the mere mention of PGD seemed enough for the insurance customer service reps to spontaneously combust.
In the meantime, after meeting with Dr. G, who we like, though we were fonder of Dr. K, we were introduced to another important party in this whole endeavor, the PGD laboratory. We “met,” via a conference call, with our genetic counselor. She was friendly though, shall we say reluctantly responsive to future questions. She informed us of some basics about CF as well as the PGD process. But most importantly she let us know about the next step; probe creation.
In order to get an accurate diagnosis using such a small amount of tissue, they need to tailor the tests to us, and to our family. In order to do that, we needed spit samples from our parents. Oh yeah, this also meant we had to deal our parents in on all the goings on. So, we did that, their saliva was analyzed, and the waiting continued.
2 thoughts on “PGD … three expensive letters.”
Doesn’t that stink, we too had to tell our parents (well mine) for our probe. I keep telling them that we haven’t gone any further due to the cost, we are 100% oop, we didn’t want them to know at all! Meanwhile, I’m on cycle two.
Laura, I hope cycle number two is going well! Update us! 🙂