We met with the RE today to discuss the genetic results from miscarriage number five. He wasn't in the best mood and pretty much said nothing has changed since the last time we met with him after our fourth miscarriage in May. That triploidy was a random event, not age-related, and not likely to repeat. He said we're in the same boat as before, faced with the same decisions as we were before. He seemed to want to leave it at that. So I asked if we could discuss all of the options again, and he said ok, not enthusiastically, but ok. I was hoping that talking about our options might help create some clarity.
Unfortunately, clarity can be hard to come by.
A few things that were decided:
Despite my longing for a miscarriage wizard, we currently feel that since everything tested is coming up chromosomal, we aren't going to pursue immune testing just now (although I have to say, Dr. Mary Stephenson in Chicago and Dr. Garcia at Penn did really peak my interest). We've already done a full recurrent miscarriage work up here and all was negative...I also spoke to a physician at the recurrent miscarriage clinic at Yale and told her the quick version of our situation, what's been done, and where we are receiving treatment, and she said Yale would not have much else to offer, except for one thing that you'll read about below (and from talking to a number of other academic OB peeps, it sounds like the academic miscarriage clinics tend to be similar in their offerings). Given that we have a clear idea of what went wrong for the three losses we were able to test, at this point we aren't going to look at more controversial, unproven tests and treatments (e.g., IVIG).
Based on one of your comments yesterday (and thank you for all of them!), we made an appointment with a geneticist M.D. here, which will be in early October. Just to get her take on our situation and to find out if there is anything else we can do or should consider. So we let the RE know about that. He seemed to think that was an ok idea (again, not enthusiastic, but didn't shoot it down).
And we did decide with the RE that I will have an Endometrial Function Test in a little over a week just to be sure there are no lining issues in addition to our other problems. This is one of those "just to be on the safe side for the future" sorts of moves. The physician who does this is a placental and endometrial pathologist at Yale (who even knew there was such a specialty?!). We've been considering this test for a while and it was the one thing the Yale program has to offer that we haven't already done.
Oh, and we're also both now taking high doses of folic acid. Low folate is associated with trisomy 21, in addition to neural tube defects, in some studies. So given that there is almost no risk of toxicity, we're adding this to both of our repertoires in the hope it might help and won't hurt.
So we did make a few decisions. But then we were left standing smack in the middle of the confusing morass of the bigger picture: the where to go from here. I'll tell you, it's a sticky wicket.
For the future, we discussed the following options:
1. IVF with PGD at our clinic Pros: close to home/work. Good clinic. Comfortable here. Can test at day 3 so even if don't have blasts can get info. Transfers fresh embryos, so hopefully better. Cons: Only tests 9 chromosomes (but would have caught all of our problems so far). Transfers fresh embryos while stim levels are still high (some docs say may hurt implantation). Unanswered questions: Is PGD more or less traumatic to embryo than CGH/Microarray? How high is risk of mosaicism in a day 3 embryo?
2. IVF with CGH or microarray in Denver Pros: Good clinic. New, potentially better treatment. Can test all chromosomes. Transfer several weeks after vitrification so body can return to more normal hormonal state (some docs say this can help with implantation) Cons: Far away, inconvenient. More expensive. Emotionally taxing. Need to get to 5-day blast stage, so if that doesn't happen, whole cycle is a waste (this one really scares me as we haven't done so well on this front in the past). Cutting-edge, experimental treatment, so could turn out to be worse than standard of care. Uses vitrified embryos, which some docs say is worse than using fresh. Unanswered questions: Is CGH/Microarray more or less traumatic to embryo than PGD? Is there lower or same risk of mosaicism in CGH v. PGD? Will I make enough blasts to make it worthwhile to test? Will we use up all of our financial and emotional resources this way? Will this be so taxing to do that after a single cycle we will feel we are burned out and just need to stop?
3. Highish dose stims and IUI at our clinic with goal of creating 4-6 follicles (I'd like to be stimmed even higher, but my RE said absolutely not because of risk of OHSS. No one is so worried about higher order multiples with us anymore...after 14 transferred embryos (and 37 embryos created in all), all we have to show for it are two dead, aneuploid babies) Pros: Lower cost. Less invasive. No surgery. No transfer. So hopefully easier emotionally? No manipulation of embryos so some docs say lower risk of aneuploidy. Basically, the idea here is to just increase the numbers on the chance that one of them might be normal... looking for the needle in a haystack. Cons: Can't test embryos.
And of course, maybe it goes without saying, but throughout all this, we will keep trying on our own. Hey, you never know. The RE encouraged this route as well.
And yes, at the same time, we are educating ourselves about adoption...reading, thinking, and feeling our way around about it. And yes, donor is still another possible option for down the line...
"This is so hard," I said to the RE as the meeting was winding down. And he said, humanity peeking through for a moment, "I know. I'm sorry. It's hard for me too. I want to be able to make it better. I want to be able to fix it." So maybe he feels almost as helpless and frustrated as we do?
Will and I dashed through the rain together and sat for a few minutes in my office after the appointment (my office is two blocks away) to regroup. We discussed the meeting and our thoughts. Apart from agreeing that our RE was not a happy camper this morning, we felt no more clarity about the situation.
The RE's parting words were: "Just tell me what you want to do, and I'll do it."
Ah, if only we knew. Around and around and around we go. We still don't know what direction to take. We're grateful that at least we have a few options.
Mo and Will are two 40-year-old health care professionals traveling the steeper than expected road to parenthood. First came love, then came marriage, then came 7 IVFs and 6 miscarriages. We are now the proud new parents of a little girl, thrilled to be able to start our family.