Tuesday, 29 April 2014

Going for the kill?

Overkill... that was Dr. Schoolie's word for whether we should consider CCS for our remaining 10 embryos when we asked him a couple of weeks ago.

We were satisfied with his answer at the time, but I've had some time to think about it and now I'm not so sure.

I believe that knowing how many normals we have left will dramatically change how we proceed.

Scenario 1: No CCS, The original plan. 
  • If I miscarried again, we wouldn't know if it was because of an abnormal.  
    • It would be more difficult to determine when it would be time to retire my ute. 
    • I don't think I have enough stamina left in me to go through any more losses.  Especially if the loss was due to an abnormal embryo, that never would have most likely never had a chance of making it.  
  • I could have a baby on the very next shot, and save ourselves the cost of CCS.  Oh, to dream!  (10 embryos is $6,875 + $1,000 because they were previously frozen = freaking gag me.)  
  • I would be seriously considering transferring 2 embryos at a time, at Dr. S's recommendation.   Having multiples and the complications and loss that could happen because of this scares the crap out of me. 
  • My clock is ticking.  I can't stand the thought of doing this all for many more years.  Six years has been enough.  Miscarriages and FETs take time.  My body seems to get pregnant even when the embryos are abnormal.  Of course, I don't know this for sure.  Especially for our last cycle.  I am quite confident that my first two miscarriages (from our own IVF and the donor embryos) were because of abnormal embryos.   In all reality, to do 5 transfers with our 10 embryos would take over a year.  If more miscarriages or cancelled cycles were thrown into the mix, it would probably be double that. 

Scenario 2: CCS reveals all DE embryos are abnormal:
  • This could happen.  This is us after all.  And Dr. S says there is a small chance of this because D has wonky sperm. 
  • We would be devastated.  I don't even want to imagine this. We would have flushed a lot of money down the toilet on this DE escapade.   However, knowing this information would prevent us from:
    • Throwing good money after bad.  Meds, lost wages, travel costs and FET costs.
    • Emotionally, it would be less painful to get one big dose of bad information than have it spread out over many BFNs or miscarriages.
  • Knowing this would save us a lot of time.  

Scenario 3:  CCS reveals some normals:  
  • Dr. S said 3-4 normal embryos would be a realistic expectation when we started the DE process based on how many embryos we have.  
  • We would know what we were working with.  How many transfers to possibly expect. 
  • We would only transfer one at a time.  Less risk to me and babies. 
  • We wouldn't have to transfer the other 7 abnormal embryos. 
    • Less emotional heartache, especially if there was one or more miscarriages. 
    • Financially, we could avoid the meds, travel, lost wages and FET costs for (maybe) 3 transfers? 
      • Math: If we transferred 2 at a time, assuming all survived the thaw, we would be doing at 3 extra/unnecessary transfers.  FET is $5,005 costs, say $2,500 for meds (Lovenox is expensive), and $1,000 for travel.  These are low estimates that do not include testing that would need to be updated.  The grand total is $25,515 vs. the $7,875 cost of CCS.  
    • Physically,  I would not have to take the drugs or have the side effects for those transfers.  Amen. 
  • If I knew that I miscarried a normal embryo. 
    • It is very important information to know, but not the complete picture.  I now know that 50% of early miscarriages are with normal embryos. 
    • Knowing this information would be more difficult for me emotionally because of the implications using my uterus.  
    • If I put all of the normals into my body and they don't work, I will have to face the music that I've done all I can do with my body and it's time to move on to something else.
  • We could transfer a normal embryo and have a baby straight away.  (I'm ready for this, universe! Pretty please?)
    • If we had a child from these embryos, we would know exactly what we had left (if anything) in the freezer.  If we didn't have anything left, but had one child, we might make the decision to end this journey hell trip there. If we had 2 embryos left, and we transferred them, I would of course have my hopes up for another child.   Knowing how many normals we have would give me a big reality check through the rest of this process if we were lucky enough to have one baby.  
    • If we try some normals, and have one or more miscarriages, we may be able to transfer our last normal(s) into a gestational carrier (if someone I know will do it - don't think we can spring for the $100k for a GC). 
    • Okay, you can have a good laugh here, because I am.  But if we had several extra embryos (ha!), we plan to donate them to another couple.  This is because we were recipients of donor embryos and we would like to pay this generous gift forward.  If I knew that I had say, only one normal embryo left, no matter how many kids I had I would just transfer it.  If we didn't CCS and had say, 4 remaining embryos, after our family was complete (again, I laugh at myself that I'm even writing this), I would probably be thinking of donating them.   Those last 4 could be all abnormals.  I don't want to give another couple abnormal embryos.  And, I don't want to be involved with donating any embryos if I can avoid it.  (PS- Did you know that to have the option of donating the embryos CCRM charges approximately an extra $750 in blood work - that was a nasty little surprise.)

Risks to the embryos:
  • We are waiting to hear this from Dr. S during our second regroup on Wednesday. 
  • Some of our normals might not freeze well a second time, or survive thaw at transfer time.  We could harm an otherwise normal embryo.

We have a lot of hope still tied up into these 10 little embabies.

We'll see what Dr. S has to say about all of this Wednesday.  I wonder if he'll change his tune?

What do you think? What have I missed?


  1. The what"ifs", ugh I hate the not knowing. I wish that we could just get a up front cost and treatment plan of what is going to work. I am so hopeful that you will get your bring home baby and possibly siblings from your ten left.

  2. Oh man... this is sooooo hard. All of it. You already know that CCS is a big deal to me, so I really understand what you're wrestling with. And I don't think it's silly to think through ALL the possibilities ahead of time. That's how I operate. We had a plan in place when we did IVF for every possible number of eggs retrieved, 1-25+. And we thought looonnngggg and hard about our choices with any eggs above 12, and then it ended up being pointless, wasted energy because I only had 8 mature eggs. But I don't regret thinking through it all ahead of time. So while it might seem crazy to imagine a scenario where you have 5+ embryos, the responsible thing is to think through it all. Kudos to you guys for asking the hard questions.

    You know the pivotal thing for me is the risk of discarding abnormal embryos that could result in a living child. But I'm not placing my issues and worries on you... if that's not a hangup for you, then I think you've got to weigh potential cost saved/lost vs knowledge gained. But then you have to factor in the risk of losing normal, healthy embryos due to the CCS or the thaw/refreeze/thaw. Even if all 10 embryos come back normal, that doesn't guarantee your miscarriage was a normal embryo, but obviously conclusions could be drawn. I'm hungry for answers, so the draw to CCS would be the potential answers it could unveil... I'm not sure if that's there for you since it's DE. It's tough Julia. I'll stop writing since this is already a novel, but talk it out with Dr. Schoolie... I hope you can find some peace with your next steps.

  3. test them.
    it is the fastest, most direct way to what you want.
    it alleviates what you don't want to happen, and for the small risk pertaining to thaw/refreeze, I think it it is worth it.
    it is expensive, but so are your other options.

    you can do this.

  4. You have really thought all of this out which is great! You should be thinking about every angle. It sounds like a lot of really tough decisions to make. Dr. Gustofson said the same thing to me, that it was basically overkill to do the CCS testing using donor eggs. But it's hard to justify that statement when you've gone through what you have. Not sure what I would do in your shoes. I know you'll make the best decision for you though. I wish neither of us had to worry about any of this anymore. It's simply not fair. Actually it's to the point of ridiculous.

  5. I think based on your logic, testing sounds like the best way to go. It could potentially save you guys so much more heartache, and I agree that there's only so long that you can go through this. If you can afford it, it might well be worth the answers it provides and the potential peace of mind down the road.

  6. Oh Julia, I've thought through all this too. We have done 3 IVFs/FETs to myself with a total of 7 embryos and only 2 turned to Jude and Brinly and then my lame body failed. 2others implanted but one was a blighted ovum and one miscarried at 9 weeks. All this to say, with quite a few embies on ice myself I often wonder these things too. It's such a gamble but I too don't think I could handle another "congrats your pregnant" all to loose it. ON the other hand in my research obviously normal embryos don't always guarantee either. Sigh. Its a never ending question. I hope and pray that the decision that is best for you two will be made known <3

  7. Dear Julia,
    I started following your blog recently and I am so sorry for all that you have gone through.
    I know there are so many things to consider, but I would absolutely test the embryos.
    After 2 fresh cycles, a number of FETS, a miscarriage and a CP I decided to cycle at CCRM from internationally. First reason, to be as sure as I could that it was not a protocol or lab issue. Second, and this is what convinced my husband, to do CCS because I preferred to learn before a transfer that all my embryos were abnormal, that to learn it by going through multiple failed transfers/chemical pregnancies/miscarriages. As you say, they take time, they are emotionally devastating, and I personally could not transfer anything blindly anymore.
    The lab at CCRM is phenomenal, and have a lot of experience with thawing, biopsying and re-freezing.
    I am thinking of you and rooting for you and hoping so very hard that you have your baby soon.

  8. I'm quite biased as I have CCS regret. When I first asked my RE about doing it, his claim was that the data doesn't show that it's cost effective. Many times the best looking embryo is chosen and successfully implants and even if you have a normal embryo it doesn't always guarantee success. To me it seemed daft just to speculate which one looked the best and to merely hope it would work. I wanted evidence. Mostly, I didn't want to discover a chromosomal abnormality while pregnant and regret not testing the embryo prior to transfer. Unfortunately, on day 3 my embryos weren't looking so hot and it wasn't sure if any of them would have make it to day 5. After transferring two day 3s, I had the option to test the remaining embryos, but I declined as I felt I would be wasting money since the embies weren't likely to make it to day 5 anyway (and we would be needing to do a second cycle). The path from my miscarriage confirmed trisomy 16, although I was pissed as I confirmed my instincts to do CCS testing were right, but I was at least relieved to have an explanation for my loss. Now after both my transfers failed, I regret not doing CCS testing even more. We may have wasted time and money transferring abnormal embryos, and would more insight if we knew the embryos were normal. I fear with our second cycle we may have to make the same gamble and do another desperation day 3 transfer, but I also have the same fear of learning that all are abnormal, which will be so devastating, but I feel that's preferable than going through multiple transfers when there's no possibility of success. I think they're being way too overconfident to claim CCS testing with a DE would be overkill. chromosomal abnormalities DO occur in younger women (although not as frequent) and I know of a blogger who had a trisomy with her 32 year old donor eggs. It can happen!

  9. I already commented,
    but I am agreeing that in a woman who is earlier in her journey,
    CCS on DE embryos may be overkill,
    but you have a very long history of loss and frustration...
    testing them is also a regret-management strategy...

    test, you know the most you can before.
    don't test, get a negative beta, get a chemical, get another m/c or later loss (g*d forbid), and you will regret not testing. and the financial cost will be the same.

    it is worth the money. I know it is easy to spend someone else's money,
    but I have been standing in a similar place as you... for me, at some point,
    I had to spare myself any for-seeable, controllable, unnecessary pain.

    we spent and spent. you cannot put a price on your heart's desire, and if you have the money, and you have an inkling to try again, spend it in the best way you can. CCS screened DE embryos are very powerful...

    can you please go over again what kind of embryos you have and how many? were they all from CCRM DE cycle? can you talk to their embryology lab? I always had a fairly good communication with them- ask your nurse to ask or ask to have an embryologist call you back and talk about your concerns with freeze thaw, CCS, etc. as well as your regroup, of course.

    you can do this!

  10. You did such a great job thinking through and laying out all your options. And I'm sure it looks overwhelming to see it that way (it overwhelms me!). I do hope that whatever you choose, it results in your take-home baby. Thinking of you, Julia!

  11. This is all so hard and so unfair that we have to work through such questions.

    You have to do whatever you'll regret the least. Think each scenario through to the end and see how it sits.

    For me, not that we have buckets of money sitting around but the cost was worth it to get a fully formed picture of what was going on. We know this latest loss was chromosomally normal, so it lets me walk away from pregnancy knowing there is something that happens in my body and no number of healthy embryos is likely to work. And so maybe our future includes surrogacy or adoption, or maybe not, but I can retire my own uterus knowing we tried everything. There is so much freedom in that. I don't think I could go through another loss -- early or late.

  12. As you know, I cannot be considered objective on this topic. I have come to the conclusion that going with the odds once (in my case one IVF and in yours one with young DE) made sense. We rolled the dice and lost. We could roll them again and have a totally different outcome or roll and crap out again. Personally, I can't take another missed miscarriage. I also imagine another joyless and anxiety filled pregnancy in the event of successful implantation of unknown quality embryos. I was waiting and worrying about the genetics the whole time, and I could never not remind myself of this fear. You know I plan to get testing if I get more embryos next cycle.

    I am very curious as to what sort of odds you will be quoted on the thaw, test, refreeze, rethaw, and I hope to get an update on that for my own selfish data gathering. I plan to ask our lab about the same thing, as we do have three untested frozen embryos. Just my two cents. I'd obviously say test them.

  13. I am just echoing the choir here in saying that testing them sounds like the healthiest thing you can do. I wish it didn't cost so much, but I am so glad it is available to you. Want you to get to your family as soon as possible with *no more losses*.


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