Tuesday, September 22, 2009

Call from the geneticist

I finally spoke to the geneticist on the phone, and I want to cry.
She said the case conference was attended by staff from the cytogenetics lab, several geneticists, IVF folks, and at least ten genetics counselors.
You might think with all those smart people in one conference room, there would be some answers.
But if you're thinking that, you'd be wrong.
The consensus of all of this brain power? In terms of evidence based medicine's take on this, our risk of another aneuploidy is the same as the population risk for my age group (age 37), so something like a 1 in 150 or 1 in 200 chance. This is very hard to swallow and everyone seems to question whether this is or is not accurate, but it's as far as medical science can get us in terms of data-driven statistics at this time. Not very satisfying.
We have normal karyotypes, so that's not the problem. Any increased risk from radiation exposure secondary to all of the medical imaging I've had cannot be quantified (Direct quote: "No one knows"). Going back to the old tissue and making an attempt to determine the parental contribution of aneuploidy (i.e., was it the egg or the sperm in our three chromosomal losses) would apparently be getting pretty out there in terms of lab expertise, and although it can be done (we asked), it would be lengthy and expensive, and they really think the problem is with my eggs ("It would really be just an intellectual exercise").
Basically, the geneticist said that our problem could be just age-related and/or we could have a spindle problem (the spindle helps the chromosomes from the egg and the sperm line up so they touch in the right places), and/or a docking problem, and/or a problem with the gene that controls the spindle (and this gene has not been discovered yet - ha!), but these are all theoretical guesses and there is no way to test for them at this time.

"One of the big problems here," she said, "is the Why. And no one will be able to prove any of these hypotheses."
From her chart note: "There are several forces at play. One is the desire to understand the basis for their history of reproductive loss, which I think is reasonable. There does not really seem to be a satisfactory explanation" (emphasis mine).
And that's the rub. It feels like the bottom line is that we are not going to get an explanation. And we aren't going to know what our real risk is going forward.
Apparently, there were some at this conference who asked why we sought "more" genetic counseling. The geneticist defended us to them, saying that of course we need answers, that we are grieving and trying to make sense of why this keeps happening to us. And what is the harm in trying to get more information? Hear, Hear geneticist! You tell them!
The geneticist said she ran the information over and over in her mind during the weekend, trying to make sense of it. She said that she's only met us once, but our history is terrible, and that we need to think about how much more of this we can go through. She said she kept trying to think about us as human beings, not just an egg and a sperm. And that the financial, personal, and physical toll this must be taking on us is great. She said twice that she was amazed that we could tell our story without breaking down into crying, then said (both times) to herself, "You must cry at home. Your story is so sad." Believe me, geneticist, we have cried a lot.
She recommended that we begin moving toward a solution - pick a direction to head in and also pick a point at which we are going to stop. In the meantime, she suggested we begin pursuing other avenues to build a family concurrently, such as using a donor egg or adoption. She said we need a way out of this sooner rather than later and that we should really consider pursuing options simultaneously (e.g., try on own, but start looking for a donor or sign up to adopt) so that we can begin our family one way or another.
At the end of the call, she asked me to keep in touch and let her know what happens. "We are all really very interested," she said, "and we are hoping for a good outcome."
"Thank you," I said. "So are we," and hung up the phone with tears in my eyes.
I'm not sure why I am so sad, except that when she went over the options (1. try on your own; 2. do new IVF cycle with PGD; 3. do IUI), it sounded just like my own ruminative thoughts circling around and around with no answer in sight. And I think I'm now facing the fact that we're not likely to get any good answers. Ever.
More than that, it's hitting me like a ton of bricks that no one is going to give me permission to stop. I think that without realizing it, I've been unconsciously hoping that someone will be able to tell us that it just is not going to happen, so that I can stop with a clear conscience that I didn't give up too early, just when we were about to succeed. Somehow having to just make an arbitrary decision about when to stop feels like it makes all of this more my fault than it already feels. Without this "permission," I'm afraid I'll feel that not only are my eggs crap, but I'm a quitter too.
I really appreciated the time the geneticist took with us. And especially the fact that she tried to consider all of the issues comprehensively, including the reality that Will and I are two sentient beings, not just a clump of cells in a petri dish.
At the same time, I feel filled with longing and grief that we will probably never find an answer as to why we've had so many miscarriages, nor will we get a good read on what is the best direction to go in from here. Which feels like another loss. Nonsensical, I know, but there you have it.

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  1. My heart aches for you. I was so hoping you'd get some concrete answers. This is more shit than anyone deserves. I can sympathize with you about having permission to stop treatments. I'm stuck in a sea of gray with IVF where there seem to be no guarantees, although due to financial constraints there is an end in sight. No matter what avenues you are considering you are NOT a quitter. Take care.

  2. I am so sorry that answers seem to not be found. What you have been through absolutely breaks my heart. I've lost 2 LO's and know the frustration of no answers with either of them, but to be in your position is much more devastating. I know what you mean about feeling like you need permission to stop, I feel like we will just keep trying until it either happens or someone tells us it will never happen. I think just knowing that it's possible, maybe not probable, just makes it harder to walk away. I hope you are able to find a direction that leads you to peace in your difficult journey. And as hard as it is to convince yourself, trust me I know, none of this is your fault. Good luck!!

  3. Mo - I am so sorry - and it has to be heart wrenching. I wish there were answers. ((HUGS))

  4. I'm so sorry there wasn't anything definitive. It really sucks. I, too, understand wanting that 'permission' to stop.
    Did you ever get my email? There were things I wanted to say but not so publicly.
    Thinking of you and sending you big hugs--knowing it is meaningless in the grand scheme of things, but just wanting you to know that, too.

  5. I wish they had been able to give you something more concrete too. The thing about fertility treatment is that nobody is ever going to give you "permission" to stop. There is always some new carrot, some new protocol or whatever, that they can dangle in front of you. Ultimately, the only people who can tell you what to do are yourself & Will. (((hugs)))

  6. I hate this for you. I know how much you want answers. I was going to refer you to that link on Tertia's blog on when to give up but i see you have it linked already :) Seriously you will know when it's time to give up - I think if someone else told you to stop, you'd either (1) resent them or (2) keep wondering what if....

    on the bright side, you are a smart cookie - you came up with all the same options as the geneticist and well done to her for treating you both like human beings!

  7. "Without this "permission," I'm afraid I'll feel that not only are my eggs crap, but I'm a quitter too."

    It's so hard. I was just telling Tony last night that I don't know if I can quit this without a successful outcome. You feel like "the one" might be just around the corner.

    I'm so sorry.

  8. For me, one of the most difficult things is the no explanation, when a part of your reproductive organs just are more unbelievable f*ed up then is humanly possible to consider for NO REASON, NO EXPLINATION it is harder, there is comfort in knowing the reason (of course I am talking about my uterus and how it died at some point in my life and no one knows when or how). And I really feel for you today, it's not a normal kind of pain, its a profound deep suffering (not to bring you down even more). As hard as it is to admit - having my doctor tell me flat out that my uterus will never ever ever work was a blessing because we could move onto a new plan, but, without hearing that, i have no idea how many ivfs it would have taken for me to accept it. I needed to hear it, and I heard it, from more than 1 doctor and more than 1 clinic (and again from any tech that evey scans me and declares - what day are you in? or tell me your not pregnant..sheesh).
    hugs, you will get through this.

  9. I was hoping there'd be some answers, too. It's frustrating that the experts can't give you any better advice than you've given yourselves. Like Heather said, I'm certain that you and Will are not quitters- far from it. You've invested more of yourselves in trying to create children than anyone I know.

  10. What a well-written post. I've "only" been through two m/c, not even close to your number, but you captured so much how I feel. How can I continue to go on with my eggs when I feel like I keep setting myself up for failure? All the doctors tell me it "shouldn't" happen again, that I should keep going, that the karyotypes are fine, but my gut (and the m/c) tells me that something is wrong.

    If you decide you've given it all you can, you're far from a quitter. Just because the science hasn't caught up to you doesn't mean that you're not 100% right in knowing that something is likely causing these issues.

    Whatever you decide to do, you and Will have been warriors, the furthest thing from quitters.

  11. Mo, I've been lurking on your blog for a while now. I've had 3 losses of my own, so I understand the pain of a miscarriage, the terror that can come with pregnancy, the apprehension about trying again, and the need for answers. I don't have any advice to offer. I just wanted to tell you that you're not alone. Many of us out here get it, and we're all cheering you on every step of the way!

  12. Mo & Will:

    We (in the land of IF) are all standing (out) here, shoulder to shoulder, supporting you guys. If we could hold your hands we would.

    Just keep breathing and being kind to yourselves and each other. You'll find your light.


  13. Wow, that is hard to hear. I think seeing you write about "permission" to stop really made me stop and think. This is such an inexact science, so much the docs still don't know, so much is trial and error. I think that permission must come from your own heart, and Will's too. No one else, even with the latest and most advanced medicine behind them, can make that decision for you. When can you get to a place where you can move forward, without looking back with overwhelming regret? When you reach that point, then that is the permission you were looking for. But gosh, it is so hard to imagine those choices, and I feel greatly for you both having to grapple with them.

  14. Mo, I'm just really sorry that you didn't get the clear-cut answers you (and we) all hoped for yourself. But no one is going to think you're a quitter if you choose to go other routes (and if this thought occurs to you, you shouldn't believe it). We all think you're incredibly strong for taking this as far as you can and for going through what you've been through. I'm thinking of you.

  15. Oh Mo. That is such heartbreaking news. My thoughts are with you as you make the decision on what to do next.

  16. I am so sorry, Mo. I, too, was hoping you were going to get some answers.

    I'm dealing with my own uncertainty right now, my own lack of answers.
    For me, using DE / adoption isn't so much about quitting, as it is about not giving up on the idea of family just because my family-building bits (for whatever reason) aren't up to snuff.

    Whatever you decide to do, you're not a quitter. You're finding a way to make this work for you, and that's a brave thing no matter what you end up doing.

    Thinking of you and wishing you a break so you can find a quiet place to figure out what will be best for you.

  17. :( That freakin stinks. I started tearing you as I read the post bc my heart aches knowing all you have been through and the need for some clarification and answers. I hope that approaching this at all angles (trying on own, looking into donor eggs, and adoption) will put a baby in your arms really soon! You deserve this and I dont think you should ever give up hope! Praying for you always!

  18. Oh, Mo! I cried as I read this post. Cried because of the lack of answers for you, and cried over the empathy you received from the geneticist. Bless her for that gift to you. I agree that it's amazing that you can tell your story without breaking down, but I know you have cried buckets.

    I agree with her about pursuing other avenues concurrently. This was something that gave me some peace. My donor committed to me as I was preparing for my last try with my eggs. It's hard to explain how much easier that cycle was for me emotionally knowing those frozen embryos were waiting for me.

    "no one is going to give me permission to stop"

    YOU ARE NOT A QUITTER. You are a survivor. I know you can handle the physical stuff. Piece of cake. But the emotional toll is grinding you down. It's not a sign of weakness to say "ENOUGH." It was different for me. My age and lack of response were undeniable. While no RE told me it was hopeless, they were realistic about my chances. After the cycle that was cancelled after 7 days with zero response, I had a phone consult with an RE who I had previously consulted with. He said that while he wouldn't say I had no chance of success, he could not in good conscience recommend I put my resources in continuing to try with my own eggs. That made my decisions much easier. I can't imagine how torn you must be without that kind of concrete recommendation.

    Mo, you and Will ARE going to be wonderful parents. I have absolutely no doubt about your capacity to love any child that comes to you with all your heart.

    Much love to you both.

  19. I'm so sorry Mo. I can't put it any more eloquently than the other ladies so I won't try, I am just so sorry that all of this is happening to you, it is beyond awful and I'm thinking of you.

  20. I am sorry for what you two are going through now! You are not "giving up" or "quitting" at this point.

    I agree with your geneticist about "moving toward a solution". I can't imagine how hard it is for both of you to move on. But I could tell it is financially and emotionally draining for you to get stuck at the same place each time.

    I have read one of the most beautiful adoption stories here http://jennyanddavidsordinarymiracle.blogspot.com/. I am not saying that you have to adopt to build your family, but I just think it is also a wonderful way of raising the unwanted children, giving them a home and love for life. I am going to end my comment with a poem from their blog:
    And so the children come.
    And so they have been coming.
    Always in the same way they come -
    Born of the seed of man and woman.
    No angels herald their beginning,
    No prophets predict their future courses,
    No wise men see a star to point their way
    To find the babe that may save [hu]mankind.
    Yet each night a child is born is a holy night.
    Fathers and Mothers -
    Sitting beside their children's cribs -
    Feel glory in the wondrous sight of a life beginning.
    They ask: "When or how will this new life end?
    Or will it ever end?"
    Each night a child is born is a holy night
    -Sophia Lyon Fahs

  21. "I think that without realizing it, I've been unconsciously hoping that someone will be able to tell us that it just is not going to happen, so that I can stop with a clear conscience that I didn't give up too early, just when we were about to succeed."

    You took the words out of my mouth.

    I am so sorry that anyone has to go through the nightmare that is pregnancy loss.

  22. Mo, let me tell you something. It's okay to stop. That does not make you a quitter; it makes you human. The fact that you have gone as far as you have is amazing! You are a force to be reckoned with. I have hit the wall after 2 failed fresh cycles. We are about to do our one and only FET. And then... well, no and then. We will move to "Plan" ZZZ. It's hard to let go. Terribly hard. But we all have our limits, and reaching them doesn't make you a quitter. Hoping that you find peace on whatever path you chose.

  23. I´m so sory that you didn´t get any answers from this.
    But I think her advice regarding that you should set your own limit as to when to stop is good. Then you won´t feel as you should have kept on going, as this was your breaking point and then you would know that you wouldn´t be giving up to soon, but that this was a part of something that you had decided and planned for and that you will be taking your next step in the plan.

  24. I am so sorry you are not finding out more. It seems like sometimes we can spend so much time searching for answers and in the end it is not truly the answer that matters. You guys deserve a child and for your hearts to find peace.

    And you do not need permission to stop. I don't know how you make the decision to move on a different path but know that you can take time to process this. In the end, you will know the right answer.

  25. I'm sorry to hear that the panel of experts didn't have any concrete answers. It seems like you've done as much as you possibly can. Sometimes the Lord just expects us to do that. I hope and pray that you guys will know in your hearts what is right for you.

    You don't need a panel of 'experts' to justify any decisions that you make. As long as your pray about it and go with what's in your heart, that's the best decision.

  26. As unsatifactory as your conference was, at least it is honest. There is so much we do not know about reproduction and genetics. Having choices is difficult.

    I've felt very sad about giving up on my eggs because I feel like I'm a quitter too. It's the giving up on myself that I don't like. I read somewhere today about how a woman who had a biological child and was going through secondary infertility decided that genes do not make a family, and she decided to use donor eggs. That really made me think, what does make a family? I can think of many examples where it didn't matter, but on some level, it does matter to me.

    The choice on what to do next is so personal, that only you and Will can decide what to do next. I know it's not easy, but you will come to an answer at some point.

  27. I'm so sorry there are no answers. this is so hard. wishing you peace in your next steps.

  28. I am so so sorry that you did not get the answers you deserve. Your feelings are completely understandable. I totally get the wanting permission to stop. I feel that EXACT same way. It is like you said what if you stop right before it was going to succeed. Please though try not to blame yourself. This is not your fault! i know though this is much easier to say then to actually believe in your heart. I wish there was just something I could do or say...You are an amazing woman who has been through more then anyone should and I hope that whatever direction you go in that you find peace and the happiness that you so deserve!

    Sending lots of HUGS!!!

  29. Oh man. That sucks. I'm sorry they didn't have any good answers for you.

    I keep thinking, it only takes one good egg. But how many times are you willing to try again?

  30. I am so sorry. I was really hoping you'd get some good answers or advice. We are hear to support you and cheer for you no matter what direction you two choose. ((HUGS))

  31. Your story really resonates with me on so many levels. My husband and I are scientists - both with Ph.D.s and years of postdoc experience. He's an immunology prof, and I left the bench to do science/grant writing.

    We went through 4 IVFs with my eggs between the ages of 31-33, and all failed miserably due to poor embryo quality. Despite TONS of eggs, great and easy stims, and super hormone levels, our embryos just plain sucked. We tried SCSA on DH's sperm. We were karyotyped. We tried and tried different protocols and REs.

    And ultimately it boiled down to this - we don't know. Could be my eggs. Could be his sperm. Could be a subtle defect in each of us that would be no biggie with other partners but that for us renders us jointly infertile.

    We chose to stop. We gave ourselves permission. We knew the writing was on the wall for a mutually biologically related child. We opted to use donor eggs.

    I'm almost 27 weeks pregnant and while I will always think about our donor, this baby is mine and my husband's.

    We may never know why we are infertile. Or one day we will have our genomes sequenced and maybe get an answer. It will be an intellectual exercise at that point, but we'll still want to know.

    But the absolute angst inducing feeling of "I must know I need to know I HAVE to know"... I do confess that it is mostly gone.

    Wishing you the absolute best moving forward - wherever your path leads.

  32. This situation sucks a lot, and I know it first hand. Your post would have fit nicely as the latest on my blog, though I haven't bothered to write about our results from the latest miscarriage - we found out yesterday they were unable to grow anything to test from the placenta, so we have less than no answers this time.

    I really hear you on the 'knowing when to stop' thing, and also on having to think about concurrent ways to move forward. We are about to start a donor egg process and search for a surrogate. I am still toying with the idea of doing one last fresh cycle with PGD and clexane, but I am so loathe to go through all this again (just had my seventh loss) I can't commit. Sigh. I wish someone would just magically appear with the right answer and fix it all up.

    I wish the same for you.

  33. I'm so sorry for all your heartache. That sounds like a very, very sad conversation. It must be so difficult to have to make the decision about when to stop, but I think you'll know when you get there. I'm so sorry I don't have anything else to say, that I can't make it better. Please know that you and your husband are in my heart.

  34. Oh, permission to stop. I remember being stuck in that loop. Still am, if we're being honest. How do you know when to say when? There are just no easy answers anywhere. I'm so sorry you're going through this. You are most decidedly not a quitter - don't be so hard on yourself. For us it came down to preserving our marriage and our sanity - and we went with donor eggs.

    I hope you guys find some peace, and that your path will become clear very soon. You've more than earned both...

  35. You are not a quitter - you have already gone farther in your baby pursuit than most.
    I have traveled a similar road, MC was blamed on my "old eggs", but we miscarried our donor egg child as well. There were no answers for us either. It took us a long time to step off that ride.
    Even though we had 7 frozen possibilities, we had to walk away to save our sanity.
    Our effort is now being put into adoption - we know we will have our child in our home sooner than later.
    Be easy on yourself - you have gone above and beyond.

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