What do you mean, I can’t have babies?

To be fair, my RE never specifically told me, “you need to use donor eggs if you want to have a baby.”

She just told me I am a carrier for a pretty serious genetic disease (Fragile-X), and I needed a $40,000 IVF procedure to do so (with payment up front, please and thank you.). Unfortunately, neither my husband nor I have a trust fund, and we hadn’t recently won the lottery. Nor could we finance the amount through a medical financing company, as they consider a couple’s total debt-income ratio (and we both have student loans. Since my husband was 2 years deep into a private law school, the loans are significant. So even though we both have excellent credit, we were denied.). Just as an aside, if you are uninitiated, RE = reproductive endocrinologist. The babymaking doctor.

Back up a little…so my husband and I were 7 months into our baby dreams when we decided to go see a doctor. We were told at the beginning that younger women should seek intervention after 1 full year of trying. Given my geriatric maternal age of 35, however, we should seek testing after 6 months of trying. So after the requisite time frame, we trotted our hopeful selves down to my OB/GYN where we had some basic Day 3 testing done…FSH and estrogen were normal, as was LH. My AMH, however, was 0.78 ng/mL. AMH is a measure of a woman’s remaining egg reserve, and mine was getting low. I started crying on the phone when the doc called me with my results, and she reassured me that she had seen women get (and stay) pregnant with that number. Well, reassuring from her end. On my end, it kind of felt like she was saying, “I’ve heard of people winning the million dollar lottery before…so keep the faith!”

Fast forward 4 more months…3 months of 100 mg clomid, 1 chemical pregnancy, and a deflated ttc couple later, my ob/gyn told us there was nothing more she could do for us. We needed to bring in the big guns of a RE. It was there, after hearing my story, that the RE told me she wanted me to get tested for something called Fragile-X. She handed me a pamphlet with the quiet words, “It’s a simple genetic test they can run on your blood. The nurse can do the draw today and send it from our office, if you would like to proceed?” I didn’t get much more information other than that from her. Or from the pamphlet, for that matter. But we agreed to the test. In retrospect, I often wonder if, given my symptoms and history, she had an inkling all along that this was my issue.

In any case, the test was positive. I didn’t know what to do. One normal X chromosome. One X chromosome with 63 CGG repeats. I was just outside the “gray area” as a carrier, and I was sporting one of the known symptoms of being a small subset of female carriers: asshat ovaries. In other words, for reasons that haven’t been clearly established, the ovaries of some female FX carriers decide to malfunction at an early age, resulting in FXPOI (Fragile-X associated primary ovarian insufficiency). Some women experience this as early as their late 20’s, while other women have to deal in their mid-late 30’s. If you would like to read more about FXPOI, I highly recommend the National Fragile X Foundation’s page on the subject. They have a GREAT faq to get you started.

Anyway, my husband and I spoke with a genetic counselor after our diagnosis, and found that we would have roughly a 5% chance of passing on a full FX mutation to our child (more about FX in another post), but a 50% chance of passing on my premutation. At the time, we were comfortable with the idea of having a child with premutation (hell, I’M a child with a premutation, and I like to think I’m pretty damn awesome.), and still willing with the idea of terminating a pregnancy if the child had a full mutation (even though we honestly believed that path would never fall before us).

But those decisions would never even truly be on our radar, however. 5 cycles of ovulation induction with Femara (3 IUI and 2 timed intercourse) and 3 cycles of OI with gonal-f and hcg trigger (all IUI) never produced another pregnancy for us. We were at the end of our rope. Move to a new RE (we started having issues with ours)? Own egg (OE) or donor egg (DE) IVF weren’t options for us, as they were both too expensive. Adoption of a newborn was also ridiculously expensive. What do we do now?

Our answer at the time: embryo donation.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s