I finally spoke to the geneticist on the phone, and I want to cry.
She said the case conference was attended by staff from the cytogenetics lab, several geneticists, IVF folks, and at least ten genetics counselors.
You might think with all those smart people in one conference room, there would be some answers.
But if you're thinking that, you'd be wrong.
The consensus of all of this brain power? In terms of evidence based medicine's take on this, our risk of another aneuploidy is the same as the population risk for my age group (age 37), so something like a 1 in 150 or 1 in 200 chance. This is very hard to swallow and everyone seems to question whether this is or is not accurate, but it's as far as medical science can get us in terms of data-driven statistics at this time. Not very satisfying.
We have normal karyotypes, so that's not the problem. Any increased risk from radiation exposure secondary to all of the medical imaging I've had cannot be quantified (Direct quote: "No one knows"). Going back to the old tissue and making an attempt to determine the parental contribution of aneuploidy (i.e., was it the egg or the sperm in our three chromosomal losses) would apparently be getting pretty out there in terms of lab expertise, and although it can be done (we asked), it would be lengthy and expensive, and they really think the problem is with my eggs ("It would really be just an intellectual exercise").
Basically, the geneticist said that our problem could be just age-related and/or we could have a spindle problem (the spindle helps the chromosomes from the egg and the sperm line up so they touch in the right places), and/or a docking problem, and/or a problem with the gene that controls the spindle (and this gene has not been discovered yet - ha!), but these are all theoretical guesses and there is no way to test for them at this time.
"One of the big problems here," she said, "is the Why. And no one will be able to prove any of these hypotheses."
From her chart note: "There are several forces at play. One is the desire to understand the basis for their history of reproductive loss, which I think is reasonable. There does not really seem to be a satisfactory explanation" (emphasis mine).
And that's the rub. It feels like the bottom line is that we are not going to get an explanation. And we aren't going to know what our real risk is going forward.
Apparently, there were some at this conference who asked why we sought "more" genetic counseling. The geneticist defended us to them, saying that of course we need answers, that we are grieving and trying to make sense of why this keeps happening to us. And what is the harm in trying to get more information? Hear, Hear geneticist! You tell them!
The geneticist said she ran the information over and over in her mind during the weekend, trying to make sense of it. She said that she's only met us once, but our history is terrible, and that we need to think about how much more of this we can go through. She said she kept trying to think about us as human beings, not just an egg and a sperm. And that the financial, personal, and physical toll this must be taking on us is great. She said twice that she was amazed that we could tell our story without breaking down into crying, then said (both times) to herself, "You must cry at home. Your story is so sad." Believe me, geneticist, we have cried a lot.
She recommended that we begin moving toward a solution - pick a direction to head in and also pick a point at which we are going to stop. In the meantime, she suggested we begin pursuing other avenues to build a family concurrently, such as using a donor egg or adoption. She said we need a way out of this sooner rather than later and that we should really consider pursuing options simultaneously (e.g., try on own, but start looking for a donor or sign up to adopt) so that we can begin our family one way or another.
At the end of the call, she asked me to keep in touch and let her know what happens. "We are all really very interested," she said, "and we are hoping for a good outcome."
"Thank you," I said. "So are we," and hung up the phone with tears in my eyes.
I'm not sure why I am so sad, except that when she went over the options (1. try on your own; 2. do new IVF cycle with PGD; 3. do IUI), it sounded just like my own ruminative thoughts circling around and around with no answer in sight. And I think I'm now facing the fact that we're not likely to get any good answers. Ever.
More than that, it's hitting me like a ton of bricks that no one is going to give me permission to stop. I think that without realizing it, I've been unconsciously hoping that someone will be able to tell us that it just is not going to happen, so that I can stop with a clear conscience that I didn't give up too early, just when we were about to succeed. Somehow having to just make an arbitrary decision about when to stop feels like it makes all of this more my fault than it already feels. Without this "permission," I'm afraid I'll feel that not only are my eggs crap, but I'm a quitter too.
I really appreciated the time the geneticist took with us. And especially the fact that she tried to consider all of the issues comprehensively, including the reality that Will and I are two sentient beings, not just a clump of cells in a petri dish.
At the same time, I feel filled with longing and grief that we will probably never find an answer as to why we've had so many miscarriages, nor will we get a good read on what is the best direction to go in from here. Which feels like another loss. Nonsensical, I know, but there you have it.
Reblog of a post that amazed me
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