Tuesday, June 25, 2013

Genetic Dead End

Have you ever wondered if you might be a genetic dead end?
Before we go any further, I want to pause. Please read this with an open mind and an un-sensitive heart... I know that for many of you, this might actually be something you have thought about A LOT... Please take this post for what it is: the thoughts being mulled around in my head as we look ahead and look behind. Also, if you're considering or are using donor eggs due to DOR or POF, I understand that this might be a super sensitive subject. But honestly, I'm not really even thinking along those lines... this is more to do with bad genetic code than poor egg quality/quantity.
Okay, so with the disclaimer out of the way... lets embark on a little trip, Magic School Bus style, if you will, into the dark, deep reaches of my mind. Ready, go.

I'm beginning to wonder (umm, maybe wonder more) if our IUI's fail us because of something dark and ominous... bad genes. Hang in there with me for a minute. We've had four "textbook" IUI's. Sure, there have been things that I've pointed at and said, "that... that could have been better", but ultimately, our doctors have loved my response to medication, we've always had "big, beautiful" follicle(s), I've always had a lining within the clinic requirements, we've always had a post wash count over the recommended amount, it's always been "perfect" and yet, not one BFP. Not one. So as I sit here with a very empty uterus and a trash can filled with pregnancy tests with one ugly line, I have to wonder "what has gone wrong?"... and "is it fixable?"

I'll tell you now that this isn't coming from dark place of "woe is me" or depression over the failed IUI. I'm still doing pretty well... I'm just thinking. I feel like this is all good stuff to think through before we officially hand over a check for a car, a down payment on a house, $18,000. So the way I see it, we could have a few options for what has gone wrong (you can let me know if I've left something off): poor egg quality, poor fertilization, bad DNA. Sure I know there are other things... but I feel like the surgery proved that there is nothing preventing implantation, that my tubes are open, that my uterus is normal... the little things are getting checked off... we're zeroing in on some game changers (and game enders).

For some strange reason, the diagnosis of infertility was actually not the first time I thought of this. I was a weird kid... I remember telling my mom in middle school that I thought I'd adopt because I wouldn't want a child to have my genes... I'm sure she thought I was the strangest twelve year old alive. Who thinks of that stuff? But as a middle schooler, I had become convinced that my family was way more messed up than other's... addiction is RAMPANT in my family, I saw all of this awfulness, equated it with the gene pool, and decided I didn't want to put a child through that... at twelve years old. As I've aged I've learned that genes don't determine everything... I'm not an alcoholic, a drug addict, etc. There is a component of choice in all of this (thank God, or I'd be doomed). But I do find it strange and a little ironic that I wanted my DNA contribution to end some fifteen years ago.

Was my wish granted? My thoughts on where we go from here are too long and convoluted at this point... that's another post entirely. But as we talk, make plans, peer into the future, I can't help but wonder if this is all for naught. What if Sam or I are balanced translocation carriers, what if the combination of our DNA yields death every time? What if he or I are meant to be genetic dead ends? Something to think about... We could get all the way to and through IVF only to learn that our DNA is just not compatible... that we cannot support life. I've asked about tests for karyotyping and such before, but I've always been assured that it is only needed if you suffer from reoccurring miscarriages or if IFV fails multiple times. Am I strange for wanting to know now, rather than later?

Have you ever wondered about this sort of thing? Was I the strangest kid in the world? Would you do all you could to find out this type of information before IVF?

I'll be back at a later date to discuss our next steps and "the plan".

12 comments:

  1. I don't think you're strange for wondering this. I just wish there were more tests that could be done BEFORE embryos were created, you know? Or that you wouldn't be forced to go through heaps of heartache via multiple failed pregnancies and/or IVFs in order to qualify for the testing. I think that really sucks.

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  2. I never really thought about the DNA part but for all of my life until I met my husband (at age 31) I always thought I never wanted to have kids. I like kids but didn't think I wanted them. It makes me wonder if after all of those years thinking that way if maybe just maybe that's how my life will turn out now. I know it's crazy thinking but it does make you wonder.

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  3. I would have to disagree with you being weird because if anyone thinks your weird then I must be weird myself. I always wondered this myself. My old clinic didn't provide this option unless of course as your mention, you had x,y,z. This new clinic does give you the option to test the woman first if anything comes back positive then they of course have to test the male. I declined the test out of fear but now I am wondering if I should get it done before and if we have to move on to IVF.

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  4. I think your doctors are giving you good advice. Gene translocation is not something you should worry about unless you have multiple IVF failures or miscarriage (which I really hope you will not!) or you know people in your family have translocations/related health issues. You coudl certainly get a karyotype if you want to pay for it out of pocket, but I really don't think it is soemthing you should worry about now. That being said, all of us who go through infertility have to spend time thinking about our genes and (potentially) grieve the fact that we will not make another person who is genetically related to us. And that takes time to process. And therapy.

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  5. I think it's natural to question and wonder about these things. Like you, I'm one who would rather know NOW (especially when the result can effect something as expensive as IVF). Thinking of you as you wrestle with these questions and praying you find a path that gives you peace.

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  6. After my first failed IVF my doctor told me we needed to run some genetic testing on me, I was a little ticked at the time that we did not run the test before the failed IVF, but it was not covered by insurance until we had a failed IVF cycle. My karyotype was normal but our second IVF was a failure. We then moved to a new doctor who recommended Natural Killer Cell testing, again I was not happy that I did not hear about this until two heartbreaking cycles. Turns out I have elevated Natural Killer Cells and needed 2 intralipid infusions, one prior to embryo transfer and one after the postive pregnancy test. Ask your doctor for every test possible, they may say no but it never hurts to ask. Thinking of you.

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  7. First I want to say I'm so sorry to hear about the BFN, I just got caught up on your blog today and I had hoped so much this was it for you! Second, I can completely relate the the idea of having "bad DNA" or something along those lines....sometimes I wonder if my husband and I just aren't meant to have biological children. There are some seeeeerious cases of mental illness in both of our families and I would hate it if we passed on something to our children. I wish there was a way to get more concrete answers about all that. If you find anything, let me know!

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  8. I'm praying over whatever it is that is causing this. That God COMPLETELY aligns your body and makes your womb ready to carry a baby. He is completely able, no matter what the doctors say!!! Please God, make this happen!!! Amen!

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  9. Yes, I have absolutely wondered this same stuff. Addiction is rampant in my family as well - generation to generation. My husband's family has some serious genetic health issues as well. And all of our cycles have gone perfectly...ALL of them...but the only one that brought us a baby was our IVF cycle. We have also wondered about balanced translocation, especially after two miscarriages. We decided not to pursue the testing because it was just too expensive.

    So sorry that you're having to deal with these questions, but I really think that they are very normal in the infertility community. I hope this makes you feel less alone.

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  10. I've had these exact same thoughts. And another thing that I can't get away from even though my doctor doesn't seem to think there is much to pursue is that I think I could have Natural Killer cells that are attacking our beautiful embryos everytime. I'm like you where things go well and are "textbook" only to end in a BFN every single time. I use to think I'd like to adopt because giving birth use to scare me. Now not giving birth scares me.

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  11. I don't think you're strange AT ALL for thinking about this. I mean, how can you not? I'm at the point where I feel like all doctors should test for ALL things... EVERYthing at the onset of infertility. I'm ready to just KNOW - to know everything about why I've had so many failed cycles. I with you, girl. It sucks, but I'm right there with you... xoxo

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  12. This has been a huge factor in my mind for where I currently am and the direction we're taking. The genetic screening cost really adds to the already expensive IVF. However...a gal such as yourself that produces so many eggs on small amounts of meds, will also most likely have lots of eggs at retrieval. I cannot even fathom that you wouldn't have some good quality if you have good quantity.

    To me, it's completely normal to have those thoughts and concerns...I would talk to your RE in depth about it and get his gut feel. All of this sucks though. xo

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