Consult #1: With Dr. San Roman

Had my first consult since the devastating news of the normal male karyotype results from our post D & C genetic testing. This consult was with Dr. San Roman, my local RE. (I have a phone consult with Dr. Shapiro of RBA on the 25th.)

Here’s what went down:

  • Dr. SR says there is a 15% chance that something else was wrong with the baby, something that cannot be detected with a chromosome count. He says that this could be a major birth defect in organ/skin/etc. development that does not have a chromosomal origin.
  • He says there is a 7% chance that the miscarriages have something to do with me. 
  • I asked: “Doesn’t it seem like the common denominator in all of this loss is me?” So far, he says, no, we cannot find that this is the case. “You have had in the past, and you have now, many smart doctors overseeing your care, and we can’t point to you as the common denominator, no.”
  • I asked: “Do you think the problem I had with my 5 past miscarriages with my own eggs was a separate problem from this 6th miscarriage donor egg? Are we dealing with something new?” He said: “We don’t know if it is a new problem or not. I’d venture to guess that there have probably been a few problems going on all along, but we don’t know.”
  • I asked: “What about endometriosis? I have never been checked for that. Should I?” He said that laporoscopy is a big deal, requiring anesthesia and for me to be on a respirator. He said that nothing suggests that women with endometriosis miscarry more often than do women without it. He explained that it can hinder a woman’s ability to get pregnant, but does not affect women staying pregnant, and that is why women with endometriosis are treated successfully with IVF alone and no intervention whatsoever for the endo.
  • I asked: “What about infusion of paternal blood cells into me?” He said that there is no evidence supporting its efficacy and it can have major side effects and can even cause serious health problems in me. He strongly does not recommend.
  • I asked: “What about steroids?” (ding-ding-ding. I got somewhere.) He said that he would suggest that I go on prednisone during the next cycle. He said it is reasonable to suggest because it has been around for 30 years, it is safe, inexpensive, and can be taken in pill form. “It would be more of a test treatment,” he said. “Just to see if it has an effect.” Prednisone would be used to suppress my immune system.
  • I asked: “What about Lovenox?” (I knew I’d get a yes to this.) Again, he would suggest Lovenox, but more for empiric reasons than because he really thinks there is blood clotting issue going on.
  • I asked: “What about DQ-Alpha matching. Sher Institute says that if there is a complete DQ-Alpha match between the man and the woman, then there is going to always be a problem between the woman’s uterus and the man’s sperm—which therefore could not be treated by using donor egg.” He said he had never heard of this, but that he would be open to reading any peer reviewed articles on the subject. I told him that I was unable to find any peer reviewed articles, which is why I’m skeptical of it myself. If anyone out there can point me to some, please do!
  • I asked: “Can we rule out DH as the problem, since this embryo was normal?” He said yes, we could.
  • He is recommending that I do a hysteroscopy with Dr. McKenna (scheduled for Dec. 4th) rather than a water sonogram, as the hysteroscopy can see what’s going on inside a lot better.
  • I’m going to Dr. San Roman’s office tomorrow morning to get my Beta checked, because I believe I started my period today (weirdest, grossest-looking period ever, by the way).
  • All of my recurrent pregnancy loss panel tests (how many times have I had this panel done, countless), by the way, have come back—you guessed it—normal. I’m so normal my uterus is like a freaking pinball machine.

So basically I came away with this: A 15% chance it was a birth defect in the embryo. And if it was something in me, let’s try two empirical/test treatments, just to see if they have an effect, not because we really think that is the problem. Prednisone to suppress my immune system and Lovenox to reduce clots and increase blood flow.

Sigh. I don’t know, guys. I really don’t know.

He said, “I highly doubt that when you talk to Dr. Shapiro he’s going to say, ‘Let’s throw in the towel,'” said Dr. SR. “It’s not time for that yet.”

“The idea that those could be our children, and that I’m just going to kill these babies by transferring them into me—it’s heartbreaking,” I said, tearing up.

I can’t remember what exactly he said, but something that reassured me that I wasn’t a “baby-killing machine” by any stretch.

What a conversation. I think I will allow self one glass of wine tonight.

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26 Comments

  1. How frustrating. I wish there were some clear-cut answers here. Before the karotyping results, I was convinced your DH played a role. Despite being told over and over that ICSI solves sperm issues, it wasn’t until we went with a donor that we finally achieved success (after 3 iVF losses and 1 failed transfer). We did a split cycle, and transferred one embryo each from the donor and DH, so I’ll never be 100% sure, unless we do genetic testing down the road. But I’m fairly convinced that our losses stemmed from wonky sperm and not eggs. (My RE also said that egg-quality can be determined by the point at which the embryos begin to die off. The first few days is strictly the mothers DNA at work. After about Day 3, the sperm kick in. So embryos that die off early or fail to fertilize indicate poor quality eggs. Embryos that hold steady in the beginning but begin to fizzle out after Day 3 indicate issues with sperm.) That was certainly true for us: we always had high fertilization rates and most held on until after Day 3. However, by Day 5 we usually had less than half of what we had at Day 3. Just some food for thought.

    Reply
    • That’s interesting, I have never, ever heard that from any doctor! Do you happen to have any research articles about the egg sperm distinction you describe?

      I’m so glad you found out what the problem was, or at least you’re pretty sure. I know you’ve been at this for so long. Happy endings are pretty great to hear.

      Reply
      • Kali

         /  November 21, 2013

        I’ve heard this but I don’t think it’s true. With my first egg donor, I had good fertilization rates, and most of those made it to blast. The second donor, fertilization rate was ok, there was some die off by day 3, but only one blast by day 5 (6, actually). Same sperm, completely different results.

        Reply
  2. I think a glass of wine will be fitting tonight.. maybe even two. It’s so frustrating to not have any answers. :( Thinking of you.

    Reply
  3. Sweetness, have 2 glasses! Let me get my thoughts in order here… First, good call on the Prednisone and Lovenox. If they can’t hurt and might help -perfect. Second, nice work on researching and being your own advocate. I am always impressed by your thoroughness and willingness to ask questions and suggest new strategies. Third, if you do a hysteroscopy and they use CO2, be prepared for SERIOUS pain. The CO2 escapes from your fallopian tubes and makes its way into your shoulders, where it presses on the nerves. Nothing you can’t handle but it’s terrifying if you don’t know it’s coming (and them saying “You might feel some cramping” is not adequate preparation). Forth, I understand how you feel about being a baby killing machine. I’ve only had one loss but I had the recurrent thought that modern medicine had managed to create a baby and I had, in very short order, managed to kill it. I felt toxic. Unclean. It’s a terrible feeling. Also, these guys/gals know their stuff. They want a positive outcome almost as much as we do. If they thought you were a lost cause they’d tell you. Lord knows my RE told me! Finally, whatever you decide to do, I got your back. xoxox

    Reply
    • Woah! I’d never heard it was painful. I should really start just *assuming* things will painful and that no one will prepare me for it. How many Advil do you think I should take? I keep trying to trust that they know what they’re talking about. I know they know as much as any doctor *can* know right now—but that it is limited. Still, I do feel a tiny sliver of hope. You got my back and I got yours, upward and onward….xo

      Reply
  4. Yes to wine after a conversation like that…100% yes. You did your research, lady! I am so sorry there are no clear cut answers. There are changes though, and that’s something to hang on to. I feel better when there’s at least a change. You are not a baby-killing machine, but I totally get why you feel that way. It is incredibly hard to put embryos in only to face loss, over and over and over again. I can only imagine (I have had two losses but a whole heck of a lot of no implantation, which is not the same by any stretch but still incredibly frustrating). I hope the hysteroscopy goes well and if there are answers to be had, you get them. I hope there is peace in this process for you. It is so, so hard. :( Thinking of you, and enjoy that wine!

    Reply
    • I did enjoy it! Just a glass, just enough to take the edge off. I was (weirdly) in a good mood last night. Probably because some part of me is believing the Prednisone/ Lovenox combination will work. Sigh. It’s survival mechanism kicking in, this belief. I’ll hang on, it’s all I got. xoxo

      Reply
  5. That’s what I would want to move forward with: Prednisone and Levonox–the combo seems to work for a lot of people with recurrent losses. I would want to try this protocol before considering LIT or Intralipid Infusions or DQ Alpha matching. Please enjoy your wine–you are doing a great job and it sounds like your RE is a fair man. XO

    Reply
  6. there’s nothing like RPL to drive you INSANE with lack of answers. when you don’t have any clue what’s going on its so easy to blame yourself. I said just the other day, if I knew this was a genetic problem I could spend less time beating myself up about every drop of caffeine (and everything else) that enters my system. i hope your having a guilt-free glass of wine (or many) tonight.

    Reply
  7. Okay, information is good, even if it’s not a lot of information. Pieces to the puzzle.
    Hope it was Pinot or something else really lovely you enjoy.

    Reply
  8. Fahti

     /  November 20, 2013

    I wanted to let you know that I did a fresh DE cycle and got pregnant with twins, lost one at 8-weeks and had a little girl. The 2nd time I transferred 1 Frozen genetically tested normal 5AA embryo and had a chemical pregancy. I was really upset and so was my doctor. He actually said it had to do with placement of the embryo. Anyway we tried a third time and transferred 2 5AA frozen embryos, again normal genetically tested, I got pregnant with twins and lost one at 8-weeks. My point is that even with DE, there is something else involved. I never understood why I misscarried the 2nd time since obviously I’d had a baby once and the embryo was supposed to be normal and genetically tested. I was also upset on why I miscarried the 2nd twin largely because it was also a normal embryo genetically tested. So go figure. I’m now 30-weeks pregant with my 2nd daughter. Don’t lose faith – try again but maybe put in two embryos – there is the risk of twins but for me personally it resulted in two successful singleton pregnancies.

    Reply
    • This is such an encouraging comment, and I thank you deeply for taking the time to write it! Yes, you are so right, even wtih DE, there are a million mysterious factors involved. The placement of the embryo, hm, that’s interesting. How bizarre that you lost the normal embryos, too! I think I will push for the double embryo transfer, yes–but most likely won’t have to b/c I think that’s what Dr. Shapiro will still suggest. Thank you again, so much.

      Reply
    • P.S. And I meant to say what I hope is obvious—I’m sorry for your losses, so sorry you lost them, and beyond *thrilled* that you had your babies. It gives me hope! Sorry—can get so caught up in the “information” that I forget to say these things. ): xoxo

      Reply
  9. Kali

     /  November 20, 2013

    I answered your post about the fetal karyotyping below–I also constantly wonder if I can keep going. I just had a HUGE disappointment Monday when my lining was very thin–this is the second cycle in a row so it’s clear something is wrong, and the idea that my ability to carry a baby is gone was overwhelming. Donor egg was my ace in the hole.

    On Monday, I was well and truly done. The idea of starting over with adoption and going through the ups and downs of that, which are no simpler than what we’re going through, were too much for me to consider. I had a glimpse of a childless life–NOT CHILDFREE, which would imply that I chose it. But childless. In my glimpse, I’m surviving but not thriving. It’s not what I want.

    Today I’m determined that there are ways to address this after we cancel this cycle or it fails. I’ve talked to my OB, who is 10X more compassionate than my RE. We will find a way for my lining to work again. It may be nothing more than keeping me off the pill so my body can function naturally for a cycle, but whatever it takes, I’m going to do it.

    I’m not asking you to rally or ANYTHING like that. I get that what we’re going through, is more than most people could or would bear. With no promise of success.

    I am writing to let you know that not only are you not alone, you are helping me, and many others, by providing a safe place to express feelings that have my family and closest friends running for the hills–such that I rarely talk to them about me anymore. Other than my drunk dialing Monday, which I described in a post below.

    Reply
    • Figuring out the lining mystery, you go, you can do it!

      And I know—“childfree” makes my stomach turn cold. No, no. You do not have to live childlessly. Neither do I. If the mysteries remained unfurled, unable to be solved, let’s stay in touch, for one thing, and help each other through the arduous steps of other options, like perhaps adoption, or surrogacy (well surrogacy is impossible for me b/c of $), or whatever else—deal? We don’t have to settle for a life without children.

      I feel like this is a process of letting go of one idea about parenthood after another—but I really don’t think this story is about letting go of parenthood altogether.

      Feeling more fortified. No small thanks to you! And all these crazy-gifted ladies. So glad we’ve connected out here in this ethereal cyberspaceland.

      Reply
      • Kali

         /  November 21, 2013

        Hey, I got more information–my OB talked to my RE, and he thinks that it is a matter of “downregulated estrogen receptors”–which would be due to the Pill, or COULD be due to the pregnancy but I don’t think so, one is super-fertile after pregnancy/miscarriage, so I don’t think the body is shutting down the uterus. It could be that I need to have a natural cycle transfer (with trigger). . . but my RE does not think this is unsolvable, and it goes along with my instincts that my body needs a natural cycle, the Pill IS a hormonal drug and I’ve been on it almost continuously since my first post m/c period.

        My instincts have been 100% on this, and I know to push my RE to honor them–but my clinic is pretty inflexible, unfortunately. Why put me through TWO cycles of this bs instead of just letting the pill go for a month–I’d suggested it but he poo poo’d it. Now he tells my OB that my receptors are just shut down and will wake up next cycle–how about telling ME that so I don’t spend two days in continuous tears?

        It’s not about letting go of parenthood but I can’t be pollyanna about how long it’s taking. It hurts. However, having thought Monday that it was over for me, the wait seems ok–it’s a blessing that there is still hope. As the wait wears on, I will be sad again, but today it felt like relief.

        Thanks to my OB, no thanks to my RE.

        By the way, when I do REIKI over my lower stomach, I feel a TON of energy. It’s wanting more energy, and I’m giving it, but I’m not sure it will be enough for the check tomorrow.

        Keep on posting. You give us all so much strength. I can’t say enough about the “safe” space you’ve provided. I’m almost out of them in real life.

        Reply
  10. Kali

     /  November 23, 2013

    Hey, I wanted to update you, my lining seems to be rallying, as of Thursday it was almost 8mm. My RE was really excited and even agreed to add viagra to the mix to keep it augmenting until Monday when we’ll check again.

    Should I need to do this again, though, I know I will not allow a long amount of time on the Pill. The cycle I got pregnant I was only on it for 10-11 days. I’ll be giving my body at least a one-cycle break from it.

    I hate how doctors worship the Pill, and refuse to consider it serious medication–it’s HORMONES. It shuts down/fools your pituitary!

    Rant over, thank you for being here.

    Reply
  11. Sarah

     /  November 25, 2013

    Life is just so unfair sometimes. I’m sorry you have had to endure all of this pain. I have a very close friend who’s mother had 9 miscarriages before she was finally successful with her- and her mom always tells her as painful as they were, it was meant to be and she wouldn’t change a single thing, as if one of the other pregnancies would have been successful, my absolutely incredible friend would never be. She tells her that every minute of her struggle was worth it, and she would have done it all over again to end up with her. You will be successful. I truly think Prednisone will be your answer. Soo glad they are exploring the immune issues! Prednisone is shown to be just as successful in treatment of NK cells as the intralipids. I feel like that is your missing piece. Praying for you!!

    Reply
    • You have no idea how much I needed to hear that right now. Maybe I can just believe in the Prednisone—can it be that simple?? Thank you for giving me a reason to sleep better tonight, lovely person. Even if I give up hope again come morning, it is nice to feel a little reassured right now. And that story of the 9 mcs and then success—well, that’s beautiful. I don’t think I could make it to 9—but then again, I never thought I could survive 6. Keep praying. xxxooo

      Reply

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