Why?

I was an exceedingly curious child. No, not curious in the way my brother was–wild, rambunctious, setting his garbage pail on fire because someone told him not to play with matches, cutting earthworms in half to see if they’d really regenerate–but I was always keenly observant, ears like satellite dishes, exhaustively analyzing and making meaning from the world around me. My mother used to make jokes about me carrying around an invisible “steno pad” to take notes on adult conversation, which I always found extraordinarily fascinating compared to whatever the kids were up to–my idiot brother, Nintendo, manhunt. Typically, when we had company, you could find me nestled right smack in the middle of the women’s “coffee talk,” Cinderella mug filled with hot chocolate, child brain in overdrive, grown-ups speaking in cypher that I doggedly cracked and digested.Ā  My favorite word: Why?

From the simple realities of a toddler negotiating the physical world:
“Don’t go too close to the edge, sweetheart.”
“Why?”
“Because it’s dangerous.”
“Why?”

To the really hard questions, the big ones, the ones adults hate answering:
“Did Daddy really die of a heart attack?”
“What would make you ask that?”
“I just want to know how he really died.”
Stunned, “No, he didn’t really die of a heart attack.”
“Then why did he die?”

I’m a girl who needs answers, who needs to know not just what or how but to plumb experiences in search of why. This yearning is etched on the fabric of my soul, coded somewhere deep and mystical in the DNA of each living cell of this body with which I am presently at war. The truly maddening irony of infertility, which has become the defining experience of my adult life, is the way my circumstances have frustrated all pursuit of this paramount question. Trust me: I have looked everywhere, from the nation’s best doctors to psychic mediums to the deep recesses of my intuitive subconscious through meditative exploration. The helpers have posited their theories, many of which failed to stand up against history and outcome. Spock, whom I have ultimately decided is not a good doctor to me, has always been content to shut down my inquiry with exasperation and condescension, which simply isn’t the right fit as we near the conclusion of this quest with its lifelong rewards and consequences. I can concede that life doesn’t owe us anything, not riches, not love, not even another day alive and breathing on the planet, so certainly there’s no clause in the human contract that says everyone can have a biological child. I get that, and I also know that I’m strong and resilient enough to don my proverbial big girl panties and muddle through the mess if need be, but I can’t do it without answers: why? Spiritually, cosmically, why? (I’ll likely spend my whole life asking that.) And, more immediately, physically, scientifically, why??? Over the past year, as I pondered the dual prospects of own-egg triumph in tandem with the donor-egg compromise, I started to envy (having mustered negligible hope for victory with my own ovaries) bloggers and women I connected with on PVED who were quickly diagnosed with clear, unequivocal ovarian failure: go straight to egg donor or adoption; do not pass Go; do not collect $200. At least those women could walk away in certainty with a clear path to life after, albeit dark and rocky and steep at times. The past few months I’ve felt a little lost at sea, untethered, treading water, big silhouettes in the distance promising hard terrain, sharks below, stars above, and no clear instinct propelling me, guiding me in which direction to swim.

Then, on a rainy Thursday, we wended our way to RMA-NJ for a consult, and suddenly things made a little bit of sense. For those who are interested in the technical and pragmatic details of why because you find yourself in similarly maddening circumstances, I’ll break it down.

(1) Synchrony: Apparently the process of hyperstimulating the ovaries and triggering them for retrieval inadvertently accelerates the development of the endometrium by about one day. For women with normal ovarian reserve and egg quality who have embryos that make it to blastocyst on time, this can still turn out alright because the window of time when the lining is able to receive an embryo for implantation is about 36 hours. However, as you get toward the end of your ovarian reserve (even if that is happening prematurely, like it is with me) your embryos tend to grow a little slower, needing perhaps until day 6 to grow to blastocyst, and with a lining that becomes receptive a day ahead and embryos that are growing a day behind, you’re not going to get pregnant even if they are (euploid) chromosomally normal. The treatment for this problem is to grow to blast, vitrify, and then prep for a medicated FET with progesterone monitoring ahead of transfer to aim for the early end of the window to accommodate a slower growing blast. In fact some doctors are looking at doing frozen blastocyst transfers exclusively because it cuts down on the higher rates of pregnancy complications (e.g. low birth weight, premature delivery, preeclampsia, etc.) associated with fresh IVF, which they attribute to this mismatch between lining and embryo development at the time of implantation–even embryos that implant sometimes don’t implant ‘right,’ which can lead to loss and high-risk pregnancy. Since I have never done an FET, this could explain everything.

(2) Sperm: “Even in reproduction, little girls clean up after little boys.” The anatomy of a sperm cell serves two purposes –store DNA and transport it to the egg cell. As a result of needing to keep things light and tight for travel, the sperm doesn’t have the same enzymes and compounds to protect the DNA from oxidation and repair damage that the egg does since it’s bigger and less mobile. On top of that, the cellular ‘engine’ that propels the sperm is itself responsible for damaging the DNA stored in the head. This is unavoidable, even in healthy sperm, so it’s the job of the egg to produce an enzyme that repairs the strands of male DNA as they unpack and merge during meiosis. Eggs retrieved from a woman with diminished ovarian reserve contain significantly less of this very important enzyme and are therefore less capable of repairing the damage, which can lead to all manner of problems from poor blastocyst development to implantation failure or early pregnancy loss. This is more difficult to treat, but this is part of the reason behind the urologist’s recommendation to retrieve directly from the testicle since sperm are then spared the stressful process of getting to their destination. We did TESE with our CCRM embryos but not with the four prior IVF cycles, so this bodes well for our case, though there is not enough research yet to prove that TESE actually helps because it’s still a pretty new approach.

(3) Mitochondria: This is the sobering reality that, even after CCS, it might just be my eggs. Mitochondria are the engines of the cell; you might remember this from 7th grade biology. An egg cell contains more mitochondria than any other human cell because it has to power this pretty miraculous process of growing hundreds of cells from a few strands of DNA until it can implant and pull energy from the mother. Even a cardiac cell, which has to fuel your beating heart every minute of every day for 75+ years straight has a fraction of the mitochondria stored inside a single human egg. When a woman nears the end of her ovarian reserve, her eggs actually have more mitochondria than young, healthy eggs. However, many of them are inert (freeloaders failing to contribute to the process as they should) and actually end up consuming the energy of other mitochondria working hard to fuel the embryo. Blastocyst morphology can be an indicator for this because it shows us how vigorously it’s growing. However, they can only watch them for so long in the lab, and the real hurdles occur when the embryo is in the womb and off the grid.

(4) “L A B, lab”: For all these reasons and more, the lab is important. A blastocyst culture that gives a day-4 and day-5 embryo all that it needs is challenging to create and especially dire for an embryo created from a compromised DOR egg. Light and air are the enemies of embryos, so it’s important to have equipment and lab protocols that leave the embryo in peace to do its thing without unnatural disruptions. Keeping everyone’s embryos in one incubator, for example, where you’re turning lights on and opening doors constantly to monitor morphological milestones is counterproductive. A young, healthy egg might make an embryo that will survive this. A more fragile DOR egg might not.

(5) Diagnosis “GOK” (God Only Knows): Some women just need a gestational carrier for reasons that science hasn’t figured out yet. This is tough to accept as a why-girl, but I can do it if I’ve eliminated the other variables.

The plan: The trouble with me and my implantation failure is that it’s also really taxing and involved (not to mention expensive!) to get euploid embryos. I still have the three from CCRM to work with, but the early day-6 blastocyst is less promising than the other two (*see point #3) and I do not have enough to give myself a chance with FET to eliminate the synchrony variable and then move on to gestational carrier. I also don’t likely have enough embryos for a second child if we’re ruling on the cautious side of statistics, and I’m well acquainted with the reality that this door will probably close on me entirely if I transfer now successfully and try IVF again for baby #2 at, say, 37. This means transferring my CCRM embryos back east to New Jersey. After speaking with nurse H last week about an FET out there in July and finding out how much insane, pointless, expensive, totally unnecessary repeat testing they would force me to do at their clinic (strict, no exceptions, because everyone else in the world is too stupid to run what seems like my 427th HIV test), which, for one, is entirely for their own self-serving profit, and, for two, would force me to miss my husband’s birthday, I’m better-dealing CCRM for a clinic that is more compassionate and reasonable with their patients despite having bragging rights to an equally incredible lab.Ā  I plan to bank two more cycles for CCS starting this summer and then doing eSET a few times to give my own body a chance. If that fails, we will try transferring our last embryos to my cousin, and beyond that is the world of donor eggs. Hey, is that land I see on the horizon?? Hmm, I think I’ll paddle in that direction!

And for the first time in a long time, I kinda think we’re gonna get the elephant.

25 thoughts on “Why?

  1. At CCRM…do you bank the day your eggs are fertilized? Or five day blasts? Your writing is incredible..It is a gift. Thanx

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      • Thanks. I too have been banking at CCRM. I go for another retrieval (4th) next month. Then, regardless of the amount will go forward and hope some make it to the fifth day and pass CCS. I am 33.
        You are so knowledgable….I think I am better off being a bit ignorant of the situation! Good luck. Have Enjoyed your blog…for long time now. Good luck to you.

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        • Thanks, and good luck to you too! We were so pessimistic and terrified ahead of the blast report and CCS results but were gleefully surprised at how great our little embryos grew in the super-lab, so keep hope!

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  2. I hope it’s not crass to say I found this fascinating. So many factors, so much we don’t even know, all adding up to life. And yet it happens.

    Hoping you get to decorate that elephant nursery soon, by whatever road, but hoping also the road is shorter and less bumpy than it looks. ā¤

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    • Not crass–I find it fascinating too! Dr. Scott asked me after our appointment Thursday just how much reading I’ve done about reproduction, and I was telling him that half of it is pure intellectual curiosity because it’s all just so incredible. And then he told me I should be teaching science, lol.

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  3. This is very fascinating and depressing at the same time. The DOR eggs suck in every single aspect. And no wonder it’s so hard to get pregnant even with normal embryos. So much has to happen . It’s amazing that you understand it so much. I would’ve had a headache trying to make sense of things. Great plans though! Best of luck, girl. šŸ™‚

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  4. That is so incredibly frustrating: to have to make decisions without knowing a clear-cut why. Without having the information necessary to make the decision, and being asked to just… choose. Figure it out.

    I’m glad you guys have a plan in place. Crossing fingers for you.

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  5. I did not fully understand the science— esp what you wrote in the “sperm” section. Amazing! Do you happen to know if there are currently any studies of that sperm-assisting egg enzyme specifically? I’m so glad you’ve spotted land. And thanks so much for the detailed informantion, love it.

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    • Hmm, this is all from my recall of Dr. Scott’s explanation, so I don’t have studies. I want to say the name of the enzyme he mentioned was topase (?) but that part is really hazy. If you want to know whether DNA fragmentation in sperm could be responsible for your RPL history, the answer is a definite yes. Even with PGD, some of the genetic aberrations that cause miscarriage are happening within a chromosome, so they can count them and have the right number despite the underlying error. Have you ever had the sperm assay? Not just motility/count/morphology but DNA fragmentation index? It’s not worth it unless you plan to TTC again for #2, but it can be telling.

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      • Yeah, we actually had the DNA frag sperm assay done twice—on accident, as DH didn’t realize he’d had it done before (there’s 500 bucks we’ll never see again, oy). Results: all good. I was actually interested in the egg enzyme because I’m curious about it, and if extraction/insertion of it is anything being researched presently—perhaps the enzyme of, say, a 22 -year-old’s egg being extracted then injected into the egg of a 40-year-old, prior to OE fertilization. Maybe my thinking’s too simplistic though, not that sort of thing would be possible. I think I might be “off the table” for #2—adoption sounds more appealing. But am also feeling increasingly open to the idea of having a little family of three, mom, dad, and 1 kiddo (especially when I think about things like retirement, college education for child, eeeek). We’ll see!

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  6. I’m pretty knowledgeable on the subject of crappy eggs but this post has enlightened me even more. I am so glad that you have a plan moving forward. I also am a “why” girl but lived in the dark for many years as to what my problem was. It’s amazing that ANYone can get pregnant when you think about the science that is involved. I think they need to teach more of this stuff in health class because unfortunately IF is on the rise in this country and raising informed boys and girls might just save our species.

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  7. I really appreciated all the science and detail here. Thank you for sharing your hard won knowledge.

    As someone who got ‘lucky’ in the go straight to DE path, I actually did feel lucky in the sense of getting to skip so many tough decisions. People thought I was crazy to say that, but reading your words tonight made me at least have that moment of ‘see, others can see my point’

    Best of luck with all of this. Seriously, best wishes from the bottom of my heart.

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    • Thanks, although sometimes the hard-won knowledge feels like it’s crowding out my brain when I’d rather be thinking about budgeting for maternity leave or healthy snacks for toddlers!

      And thanks for stopping by to comment and give well-wishes šŸ™‚

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  8. Oh A! I’m not sure what happened, but wordpress must have bumped your blog off my list! I didn’t get your posts and had been wondering how you were doing… Luckily I stalk you on my list of favorites sites independently. An utterly engaging read as always my dear (do you write/publish on other topics in another world by any chance?) Sometimes, often, I get the impression that the women I read are more insightful than their REs… Deep, deep admiration for your efforts to become informed, empowered… And even more to witness your strength and perseverance. This is so trying and you are really giving yourself the greatest chance possible! I’ll be following you (anew) and hoping for big beautiful babies to come!!

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    • I was wondering about the ‘unfollow,’ but I just assumed you were having a moment of needing to disconnect–I’ve had those, so it made sense to me. As far as writing, I fancy myself a poet too, but I don’t put it out there. I’m doing some Gotham Writers intensives this summer, though, so who knows! Thanks for all the flattery and well wishes, and congrats on your big news!!

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      • Oh no, was really annoyed, bewildered about the totally unintended unfollow… About my big news, I am really laying low, trying not to think too hard (i.e. freak the f*ck out). I’ve already been here once before, a year ago, and didn’t make to my ultrasound… No illusions, no ignorant bliss. That said, I HAVE to hope, so much depends on it…

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  9. Huh, I know that FETs can sometimes be a better chance, and that was on the cards for us ( once we managed to get some frozen ones) before my various reproductive organs started working somewhat ( can’t stay pregnant).
    Interesting to know the science – while I am curious, it also depresses me.

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    • Yes, I was reading some of your history when I perused your blog the other day and the RPL trajectory reminds me so much of myself. Do your doctors think this is a hemo/thrombo problem? Looking at the fertilization and blastocyst rates, it seems like embryo quality is a factor too. My doctors have been blaming my RPL and repeat IVF failure on my eggs for years, which was why the CCS results surprised us. Have you ever tested your embryos or any of the fetal tissue?

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