RE meeting: sticky wickets

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

Genetics are back

We would have had a girl. She had a triploidy: 69, XXX (yes, that's right. 69. XXX. Now, knowing my luck, I'm going to get a bunch of hits from people looking for porn. Sigh). But basically this means our little girl had three full sets of chromosomes instead of the usual two. The chromosomes would look something like this:



So far, my RE has said by email: "Random event. Not age-related. Not likely to repeat. Not compatible with life."
Wonderfully fast response time with the email, and the info is much appreciated. But he's kind of the king of brevity, no?
At the moment, I am relieved to find out there is nothing I could have done differently, nothing I did to harm the baby. That helps to know. Enormously. At the same time, I am stunned that we're having another random* and unlikely* bad event.
Just to review, here's the line-up of pregnancy disasters over the past two years:
Pregnancy number 1 (9 weeks, after IVF): monosomy x and trisomy 21
Pregnancy number 2 (7 weeks, natural): lab loses sample (aarrrgh!)
Pregnancy number 3 (5 weeks, natural): trisomy 16
Pregnancy number 4 (chemical, after IVF): too early to test
Pregnancy number 5 (9 weeks, natural): triploidy
Oh, and in addition: 5 IVF cycles with 14 good-looking embryos transferred. Fourteen!!!
Are we really unlucky or is it just me?
We meet with the RE tomorrow to discuss options. More to come.
As always, we welcome your thoughts. It helps to know you're out there. And maybe one of you will have an idea we haven't thought of.
Mo
*How often do "random, unlikely to repeat" things have to keep happening to not be random and unlikely anymore? And is it too much to ask for some random good things happen occasionally?

Surfacing

We were overwhelmed with the response to our sad news. Thank you so very much for all of your comments. Longtime readers, we feel like we know you, even though we haven't (likely) met you in real life. Those who took the time to comment for the first time, thank you too. You may think that when you're the 128th, or the 209th, commenter that it doesn't matter if you leave a message, but it does. We read every single one. Many of them while I was waiting for surgery. And they helped. Each of them. All of them. So thank you.
I have considered starting a post many times since we lost the baby, but just don't know where to begin or how to express what we're feeling in words.
I am at a loss for words.
I am lost.

Every miscarriage has been different. You'd think we would get the hang of it, become used to at least our own reactions, but they keep changing. This latest pregnancy, I felt very hopeful. The RE said the baby looked "perfect"; the OB said she was "very optimistic." I also felt intermittently convinced that we would have another bad outcome. Because that's what has happened every time. And then to see the baby lying there so still on the ultrasound. No heartbeat. Again. Another missed miscarriage.
It is terrible that our worst fears keep coming true over and over again.
The prospect of trying again fills me with dread. Even if I somehow knew we had a perfect embryo, pregnancy right now has been transformed from something I have always, always wanted to a fear-filled nine months that I'm not sure I can do anymore. This is so saddening and is another loss, in addition to the five pregnancies. The experience of growing and nourishing a child inside of me - something I have always longed for since I was a girl - feels ruined.
These many attempts and consecutive losses - which have spanned our entire marriage - are taking a toll on me, on Will, on our relationship, on our friendships, on our families. I don't know how to grieve the losses over and over again and then move forward. I feel that I am becoming suffused with a sadness that just doesn't entirely lift. And that our strategy of just continuing forward hasn't worked because it seems like there is always just another loss around the corner.
One thing I know for sure: if we're going to try again, I need to be seen by a recurrent miscarriage specialist first. We had a recurrent miscarriage work up at an academic medical center, which turned up no clotting issues and found Will and I to both be chromosomally normal. After all of it, they found nothing, really. So we were told to just keep rolling the dice and hoping for the best. I can't do that any more. I fear that we have more than one problem going on, something in addition to our two confirmed chromosomal losses. Maybe my body is rejecting the babies. Maybe the placenta is not forming correctly. But I do not believe that we have merely fallen on the wrong side of the odds five times in a row. I refuse to gamble again with my sanity and our relationship without arming ourselves with everything we can.
Even armed with information, trying again feels psychologically and spiritually perilous.
At the same time, I can't imagine a life without children.
I do not know where to go from here.
Mo

9 wks 2 days u/s: missed abortion

Thank you for all of your supportive and caring comments over the past few days.

We had our ultrasound this morning, and unfortunately, there was no heartbeat. The baby died sometime between last Friday and today.

Our wonderful RE is fitting us in for a D&C later today. Of course, we will have cytogenetics run to see if we can determine what went wrong.

Almost impossible to believe that we got this far only to have heartbreak again. How is it even possible to have five losses in a row? Incomprehensible.

We are shocked and deeply grieving. Please keep us in your thoughts.

Mo