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.

The Countdown

187 days, 17 hours, 23 minutes, and 08…07…06…seconds.

Thanks to a nifty countdown app, that’s how long my husband and I have until we leave for Brno, Czech Republic to undergo donor egg IVF at a clinic called Reprofit International. I can tell you, I am practically crawling out of my skin right now, waiting for January 4th, 2015 to arrive. 6 months. I can do this, right?

I don’t have a protocol for meds yet, but I will post here when I do. I have searched all over the kingdom of Google, but I must really suck at specific searches, because I can’t find information on what protocol women have done while leading up to frozen donor egg IVF. You read that right. We have chosen to use frozen oocytes as opposed to a fresh donor cycle. The upside?

  1. The clinic has one of the largest cryobanks in Europe (more donor choices).
  2. I don’t have to sync cycles with the donor.
  3. DH and I don’t have to worry about something going awry with our donor (and, therefore, having to cancel our cycle).
  4. It’s cheaper (€4000 (roughly $5477 as of this writing) for a frozen cycle and €4500 (roughly $6162 as of this writing) for a fresh cycle.).
  5. And – most importantly – ASRM (American Society for Reproductive Medicine) recently stated, “clinical pregnancy rates are similar between fresh and frozen cycles, but that that frozen cycles are more cost-effective, with a shorter time to cycle start and significantly lower cancellation rates.” (You can read the full press release here.)

The downside? We are guaranteed 8 good quality oocytes with a frozen cycle, where with a fresh cycle, we may get anywhere from 7-12 good quality oocytes, depending on how the donor responds (unlike US donor protocol, where up to 25-30 oocytes might be retrieved, the Czech clinic uses low dose stimming. It’s less impact on the donor, and in some cases, produces better quality eggs.). Then again, that number is just an estimate. We could retrieve just 5 eggs from a fresh donor.

But I digress.

The countdown continues…and I need to find a way to keep from going insane. I think this blog will help, and hopefully not just me. When searching for information on my diagnosis (fragile-x premuation carrier, fxpoi (fx-associated primary ovarian insufficiency) and how women were able to get pregnant with it, I found a frustratingly SMALL amount of information. If I can get my thoughts out of my head, and help someone else out in the meantime, then I’m hoping these next few months will be a little easier.