Talk with Dr. Shapiro

I spoke with Dr. Shapiro on the phone this afternoon. He said that it’s hard to get enthusiastic about what is happening. He said that we don’t give up when there is a beating heart, and in rare cases a situation like this could turn around, but he did not sound hopeful at all. He said that this is “acting genetic,” in particular like Trisomy 16—the fetus’s growth arresting around week 6, heart stops beating around week 9. He said that he thinks that if something is going to announce itself it will do so in the next 10 days or so. He does not sound hopeful about little star’s heart beating past week 9.

I’m still trying to feel hopeful. I know that it is my only job right now. If I had even one symptom it would help.

He said that if I miscarry on my own, I should not bother collecting the tissue and having it tested; but if I get a D & C, see if they can do an array CGH test on the tissue. This was not a conversation I wanted to have, but knew I had to know—I asked, I prompted it, and there it was, little star reduced to “tissue.”

I asked if he thinks there is a problem with the donor. He said no. He said that if this is genetic, it is most likely a fluke random genetic anomaly, a lightening strike sort of thing.

At the same time, he seemed to be saying that there is a 40 – 50% chance of any embryo being “genetically infirm.” I didn’t know how to square this with the lightening-strike comment.

He is going to find out if other couples have used this donor’s eggs since I did, or concurrently with me, at other centers and if so, what their pregnancy outcomes were. If they discover other miscarriages, we will move on to another donor.

But if not, we will move on with our two frozen embryos, which were a Day 5 and a Day 6. Both of them graded “Bbb,” which he said is “very good” quality. We would do a double embryo transfer.

He said that after a D & C, I would wait 1 month for my period, then have my uterus checked, then could start medications. He estimated that the earliest I would be able to do the frozen embryo transfers would be the beginning of January.

Because I am Factor V Leiden and MTHFR heterozygous , he said he’d put me on Lovenox, but he really does not think this is a clotting problem. “Clotting is a second and third trimester problem anyway,” he said. He sounded unenthusiastic about putting me on Lovenox, but thought we probably should.

He thinks that I have had all of the immune testing done that I need to have done, and strongly does not recommend that I get any more done. (This was the same opinion of my new Obgyn.) He does not recommend any of the immune therapies, which he said are being offered by about “three doctors out there,” and the American Pregnancy Association (I think that’s the organization he mentioned) is trying to quash their practices.

He said that there could be some unknown problem with my uterus that no one has been able to discover yet, but he did not sound drawn to this theory at all.

He’s also witnessed cases in which, after a great deal of loss and heartache, it was finally figured out that all of the losses were actually traceable to the husband, who had some rare, difficult-to-discover single-gene problem.

We weren’t talking about this pregnancy any longer as if it were a baby. We were talking about it as if it were a science problem to be untangled.

Also, I asked if he thought we had a poor fertilization outcome with this donor, and he said it was “standard.”

That’s about it.

So, here I am, on the phone with Freedom Pharmacy, trying to get a resupply of my Crinone and Vivelle to me by Monday—I was advised to wait until I got another scan and saw the heartbeat, and so now, all of the rushing, the authorization-ing, the not-pinned-down-yet-ness of the order and a thousand phone calls. I am so tired of managing all of this—the practicalities, the emotions, not to mention the physical experience—that I could really just scream. But I am keeping it together for now as best as I can.

As best as I can.

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17 Comments

  1. This sounds like a really difficult conversation to have, but also a really necessary one. He did not say anything that added bad news to the situation. He added positive things only: he didn’t think it was a donor issue but he’ll check, he does not feel concerned about immune issues, the other embryos are of good quality. He did not blow smoke up your ass about little star, even though you may have wished him to. But he didn’t take any of that 20% chance away either. I am continuing to hold out hope for you and for star. But I also am so glad you have Dr. Shapiro, because he sounds pretty fantastic. Still thinking. xo

    Reply
    • You’re so right, lentil. It was a hard conversation, but ultimately, I learned what I needed to know. Thank you for helping me to fortify my confidence in the okay-ness of just listening and taking in and believing, and not catastrophizing. He is a fantastic doctor, and that makes all of this so much easier. I need to let go of my tendency to want to be the one in total control. Trust. Just trust. Make educated choices, but trust. This was a really helpful comment!

      Reply
  2. I am keeping hope. I just went through this and ended up on the losing end of things but am convinced that there are miracles that happen and there is NO reason why your little star can’t be one of them. Sounds like your doctor is pretty awesome. Big hugs and lots of prayers and even though I just started following, I’m here for you in any circumstance.

    Reply
  3. Sarah

     /  October 12, 2013

    I came across this, and thought of you. Holding out hope & Praying for YOUR miracle!
    http://www.medhelp.org/posts/Maternal–Child/heartbeat-but-fetus-not-growing/show/179878

    Reply
    • Oh yeah, I saw that too! Well, we’ll see, but I’ve been here before, and I’m feeling that same drastic change. It’s not looking good. But I’m feeling more peaceful about it all.

      Reply
  4. Tess

     /  October 12, 2013

    In terms of how to square it — it makes logical sense: It’s a lightning strike because most incompetent embryos don’t implant. The embryo would have just been a chemical, or not been able to implant, but it was so strong she/he managed to make it this far along It’s why they tend to put back in 2 embies, and their is only a 30-40% chance of twins — because it’s pretty common for one of the embies to be incompetent.

    I’m so sorry about all of this.
    .

    Reply
    • I wanted to say this too but wasn’t sure if you were ready to hear that. If you had gone the route of double embryo transfer, you would be worrying about a vanishing twin right now, which would be hard, but not this hard. You hedged your bets because it was worth it to try to avoid the risks of a twin pregnancy, which was the best decision you could have made at the time. But it doesn’t mean anything for the two frozen embryos. Statistically, if this is genetic, there’s a pretty good chance both of those are normal. And your star still has a 20% chance, but if not, maybe it would be easier to let go if you could have some faith in the frosties. Thinking of you!

      Reply
    • Ah, I see what you’re saying. Okay, that makes sense. Thank you. x

      Reply
      • You know A you really nailed it. It is proving easier to just continue this letting go process—KNOWING that I cannot with my mind, like a sci-fi character, create a miscarriage, that I cannot will it to happen by letting go. That’s important. I’m not ruining her chances. But I have given myself permission to listen to what’s happening in my body, a tune I’ve heard before, and just cycle into it, and start feeling that faith in the frosties. It’s weird. I’m not even beating myself up for not doing the double embryo transfer—something I kind of thought I would do. It’s like all of my coping skills are rising up and saving my ass right now. You’re right—I did what was best at the time, and what was recommended. It’s more bad luck, perhaps. Or perhaps I’ll look into what else could be going on with me. Or perhaps it’s the donor. But what we’ve done so far was just what we needed to. I’m protecting us from blame with all I’ve got, keeping the integrity, staying calm. Today is so much better than yesterday and the day before. Thank you for helping me stay positive!

        Reply
  5. Kali

     /  October 12, 2013

    I am so sorry. But my baby’s heart stopped beating at exactly 9 weeks, though there was no halt in growth and the heartbeat was 120 at 7 weeks–I didn’t have a 6 week scan so I guess for all I know I also had a Trisomy 16. I am VERY glad he is checking the other recipients of this donor. With my donor, there were three recipients, three pregnancies, three miscarriages ALL around the same time–2 at exactly 9 weeks (by baby’s growth the doctor said the heart had stopped within one or two days, same with the other couple) and the third after that though there is no telling when that third baby’s heart stopped beating, since they could have had their scan at 8 weeks (when all the hearts were still beating) and then discovered it at the first OB appointment.

    I am so glad Dr. Shapiro is being compassionate about the donor issue. My clinic was not, even in the face of the evidence, I cried and fought for two months, and had decided to move on (though wasn’t sure which clinic, now I know RBA is the right choice) but relented I think when it was clear that I would be leaving the program with my money. You are at a more compassionate place than I am. But the need for the refund option limits our choices, though through you I know that RBA will be my next clinic.

    Like you, I would be continuing the drugs until there was certainty one way or the other. I am praying for you and little star. The other day Twinkle Twinkle Little Star popped into my head and I sang it aloud, thinking of you.

    I am so grateful to you for sharing on this blog. The timing of it is helping me heal. I wish I could hug you in person.

    Reply
    • Oh my GOD. I am so sorry! That makes me so angry. The evidence is so undeniable. Oh sweetheart, how could they even think of making you stick with that donor? I am glad they relented. And overwhelmingly glad that I’ve helped you in any way find a clinic you feel more comfortable with, if it comes to that. You are a doll for singing that song, that makes me cry. I just want to hug you too!!!

      Reply
  6. hope

     /  October 12, 2013

    i am so so so sorry. This must be so hard. but, I hope you can find some consolation in the fact that you have these 2 beautiful frosties. I wish the path to being a Mom was easeir for you…

    Reply
  7. Amanda

     /  October 12, 2013

    I’m not a doctor. Or nurse. Or anything medical. And I’m not trying to pump sunshine up anywhere on you, but even with everything that was said I’m holding out hope. My first time ever visiting your blog was “the night you thought your baby died” post. My 1st comment ended with the question Maybe there’s hope?. I shared my teeny tiny bit of wisdom that helped me, my pregnancy mantra, on your last post. And I’m here again to say I have hope for you and your little one. It ain’t over ’til it’s over!!! And by golly, today you are pregnant, and you love your baby.
    My brain is all over right now, but I remember the lingo PUPO during my treatments. Pregnant until proven otherwise. And until it is PROVEN OTHERWISE, you are still pregnant with your baby. I hope I’m not overstepping here, but I just don’t want you to be entirely defeated at this point. Is the writing on the wall… perhaps. But as long as that itty bitty heart is beating, your baby needs your encouragement and strength.

    Reply
    • I hear you and thank you for thinking of me, but I know the HCG is not rising. The difference between how I feel (and how I look) now and how I felt when it was rising is night and day. Plus I have miscarried 5 times before and know—really know—what this feeling (and change in feeling) is. It is impossible to hope at this point. I am in the process of letting go.

      Reply
    • But also Amanda—thank you for being such a tireless cheerleader, goddamn, you are awesome. I am trying to listen to what my body is telling me because doing otherwise is actually kind of more painful—I know that seems counterintuitive—but I can’t tell you how lovely it is to know that you’re out there rooting for me, and others are singing Twinkle Twinkle Little Star. How amazing is that.

      Reply

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