Miscarriage wizard: any recommendations?

WANTED: RECURRENT MISCARRIAGE SPECIALIST

Increasingly desperate married white female seeks obstetrical wizard who specializes in recurrent miscarriage. Willing to try conventional as well as unconventional approaches to try to determine causes of the demise of multiple first trimester pregnancies, as well as to find solutions to prevent a sixth such loss. Willing to invest a significant amount of her dwindling savings (although insurance would be nice!)for right match. I offer well-reasoned questions, excellent (if increasingly caustic) SOH, and impressive patient compliance. Interested parties please contact at moandwill@gmail.com.

I first heard the term "wizard" used in a medical context by my oncologist several years ago when he and a team of surgeons and a big ole academic tumor board thought my cancer had recurred. Which would have been REALLY bad news, potentially deadly news. My oncologist turned to me and in his kind but honest way said, "Sometimes, Mo, you're at the point where you need a wizard, and I think that time is now." He said he was not qualified to provide the advanced care I would need and he proceeded to give me two names: one at Memorial Sloan-Kettering in NYC, and one at Stanford University in Palo Alto, California.

Through an amazing turn of events, two weeks later it was determined that I HADN'T relapsed and DIDN'T have to have a bone marrow transplant. Which left me enormously grateful, not to mention thoroughly shaken up and feeling as though I'd had a brush with the great beyond.

But it introduced the idea of "wizards." And I think that's where we are at with this miscarriage situation. I just can't keep doing this. I can't keep losing baby after baby. I need to find out how to stop this from happening over and over again (Two losses were chromosomal, but we're not sure about the rest). It is not good enough anymore to hear that it is bad luck. It is not good enough anymore to hear that my risk of miscarriage is similar to any other 37 year old (which is what the genetic counselor told us the day before we found out our latest baby had died). I don't believe it. And I can't just keep hoping something different is going to happen. I can't. We've had the standard miscarriage work up (all negative - no clotting issues, no nothing) and I've been seeing one of the top REs in the country.

I just keep thinking there must be an answer out there. And so I turn to you all, and your enormous base of knowledge. Does anybody know Who's Who in the world of recurrent miscarriage specialists? I'm actively seeking any and all advice. We'd like to keep it to the East Coast/Mid-Atlantic region, but if you know of someone further afield, I'd be interested in hearing about them too. Anybody who would take a long and detailed look at our situation, be willing to think outside the box.

A wizard, people. That's what we really, really need. Do you know one?

Mo

The joy of someone who gets it

Yesterday I met up with Sprogblogger for lunch. I was nervous because people are different in real life than they are on a blog and I feel like I know her from her blog, and well, what if she wasn't how I imagined? What if it was terribly awkward? But mostly I felt grateful we live in the same area and were able to connect in person. Because Sprogblogger is someone who - unfortunately - is walking in my shoes.

(I even had the dark thought that between the two of us, we're almost to double digit losses.)

It was really great to connect with her and talk for a couple of hours about our thoughts, fears, our many questions, our nascent plans for going forward.

Throughout, my overwhelming reaction was one of relief, a feeling of yes, yes, YES!!! That's exactly how I feel!

(I restrained myself and didn't actually scream this in the restaurant, but that's what I was thinking).

For one afternoon, over a delicious late lunch yesterday, the pleasure of being in the company of another who truly, truly gets it, because she is living it. It was a rare pleasure in a difficult time. And I was filled with gratitude.

Mo

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

Thoughts of a habitual aborter

It has now been four days since we saw that the embryo is alive. That's 96 hours, or 5,760 minutes if you happen to be counting them, which I am. A lot can happen in this amount of time. When you've been through recurrent miscarriages, that is plenty of time for your mind to go to very scary places.

I know that this is a particularly hard week. It is the week during which we lost our first pregnancy. The only other time we've had a heartbeat. The only time we got really, really hopeful, and then were crushed. I know that this week is the 8-9 weeks timepoint that I am terrified we can't get beyond, the point I fear a baby in my body can't live past. And for those reasons I know I can't expect myself to be rational.

I also know that prior to this week, I've already been convinced that the embryo has died at least five other times and, yet, despite my lack of faith, he was still there every time we have checked, most recently last Friday measuring on track, heart beating enthusiastically at 185 beats per minute.

I know this. But I am still prone to magical thinking. To fearing that the more people who know, the more likely we are to lose the pregnancy. That the more hopeful I get, the more likely we are to miscarry. That if I let my guard down for a second, all will be lost.

And despite knowing that overanalyzing symptoms will bring nothing but grief, I continue to scan my body for the slighest sign, or rather focus on the lack of them. When I wake up in the early mornings, I sometimes wonder if this entire pregnancy is a figment of my imagination, something I dreamed up because I want it so badly. It doesn't help that the past two to three days, I haven't felt very pregnant. Not really nauseated (except when my husband Will had me help collect the kitchen garbage off the floor after the bag malfunctioned). Not really that tired (stayed up until 9:30 without even trying). Not that short of breath. Not really much of anything.

All this is true. It is also true that I sometimes talk to the embryo, mostly in my thoughts, but occasionally out loud. On Monday, after I (we?) presented my dissertation to the graduate school dean and had my exit interview. I (we?) walked down the stairs, and I said to Embryo, "Well, that went pretty well, didn't it? We may never be in this administrative building again. Can you believe it? After all this time!" Or Sunday, walking down a leafy street in my neighborhood, I quietly put my hand against my stomach and thought how great it was to get to carry this embryo inside of me. At least for now.

That's the thing. Even when I'm feeling hopeful, there is always that thought. At least for now. So far so good. Looks good today, but who knows about tomorrow. I try to let go. I try to let myself enjoy the today and I try not to anticipate tomorrow. I tell myself, you may never get to have tomorrow, so don't miss out on today. Push your fears aside and experience it. And I try, again and again.

On Thursday morning, we will get another peek at Embryo to see if he is still with us. If Embryo is alive on Thursday, we will be past the beginning of nine weeks. Which we have never been before. We will be in unchartered territory. Only 2,880 minutes to go until then. I will try not to squander them.

Mo

p.s. And today I've had more spotting. As though just writing about this makes me start to bleed. Not just a whiff of pink like last week, but at least a tablespoon of dark red blood. Ugh. Seems to have stopped, but if it returns, do I call OB or RE? Just wait it out until Thursday when u/s is scheduled? Nothing they can do anyway, right? Sigh.

Sundays of grace #17

After a hiatus, Sundays of Grace returns!

So what am I grateful for?

1. I am overjoyed to have gotten this far in this pregnancy. It is still early days, and we are both terrified at least some of pretty much every day. This has definitely not been for the faint-hearted! But the overriding feeling I have is immense gratitude to be carrying this child, for today at least. We are overwhelmed by the almost unfathomable possibility that we could be parents and bring a child into the world. We have miles to go before we get there, but what an amazing journey!

2. I am so grateful we had the opportunity to travel - together - and spend some much needed downtime. It was wonderful to spend two weeks learning about different cultures and focusing on us as a couple after weeks of 7-day workweeks. I'm especially grateful in this difficult economy to have been able to afford to take an extended vacation.

3. It still hasn't really sunk in, but I am grateful to be done with my degree. Grateful to have the opportunity to use my brain for a living and to have received a scholarship-funded education. It's been a lot of hard work, but I'm pretty lucky to have had the chance to spend the last several years learning.

Mo

Reassured

Thanks for all of your reassuring comments. The spotting has stopped, thank God. And hearing all your stories of totally normal pregnancies and births after spotting really, really helped. So thank you. Very, very much.

Mo