Monday, July 28, 2014

A new twist on the same old question

I appreciate everyone's comments SO much. I gain so much insight from all of you that I do not necessarily get when talking to a doctor or even my husband. Because of that, I'm hoping that now with the additional information I have, we can consider and reconsider and see where we land.

So...the question remains:

CCS testing on my already frozen 5 embryos (3AA, 3AB, 3BA, 3BA, 2/3)

Why am I revisiting this?

Because now we're looking at at using a gestational carrier and I want to know that we're taking every precaution and make sure that after everything we've gone through...we're giving ourselves the best possible chance.

Key points:
  • We only have 5 and they have not been CCS tested
  • We don't know if our GC is comfortable with transferring two, that's still up in the air
What's different from last week's post?

I heard from CCRM. OF COURSE, they have their own spin to everything. So I want to share what I was told by Dr. G, and then ask yet again, for your thoughts. Because honestly, it's pretty tough.

Dr. Gustofon's own words:

"Because of cost, most couples using a GC opt to transfer two."

I really do understand this. Transferring only one, means we will most likely only have one child. Ever.

"However...IF we choose to CCS test our embryos (at the cost of $7000), risks are about 2% for loss of the embryos. They do this fairly frequently and it has been very safe and effective. But still...there is that chance. "

Am I risking my embryos by considering this?

Not only that..."the caveat with CCS testing of donor eggs is that we can only transfer ONE embryo per transfer into me OR a gestational carrier. There is never the option of transferring two because the risk of twins then increases to >60%. Without screening, we have the option of transferring 2."

So...NOW what?

My ultimate goal is a healthy pregnancy and a healthy baby. CCS testing and transferring one is obviously more in line with achieving that goal. The icing on the cake would be twins and our family would be complete.

But would we not be complete with just one? Maybe we would be.

I read about all the lovely women that have carried twins and had healthy pregnancies and babies. But there are others, many that we all know, that have had heart wrenching difficulties.

I also have had a lot of stress with the constant talk of "what happens if there are genetic abnormalities in the pregnancy and you and your GC have to agree with who makes those decisions?" Typically the IP's make those decisions but that has to be agreed upon and it's a hard thing to discuss or even think about.  If I screen my embryos I take a lot of that risk away, which takes away the worry for that, because trust me, that thought is very difficult for me. I don't want to be in that position and I don't want my GC in that position.

So what would you do? If this was it for you? One shot? Transfer two that have not been tested? Transfer one that has?



27 comments:

  1. omg, such hard decisions! I don't know what i would do... but i lean towards the testing and transferring 1 i think... no matter what you choose, i'm sending you lots of prayers that it is successful!

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  2. I just ran across your blog and you have gone through such a journey and I am thrilled for you on your new/shifting path. I don't have any experience or thoughts on the testing. My only experience to share is transferring 2 and regretting it. We had a horrible twin pregnancy and after a year since having our twins, I still face more surgery for me planned for this fall. I would have rather transferred one at a time, over multiple years to get them both (of course nothing can be that perfectly planned!). The huge costs we undertook from a complicated twin pregnancy equalled 2 singleton pregnancies. I sooo don't want to scare you, just sharing the perspective in case you want to consider it as you make your decisions. I wish you nothing but the very best!!!!

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  3. It always seems like twins would be great because that's 2 right? BUT then I always go back to thinking about all of the risks involved with 2 at a time. Sounds like maybe testing and transferring 1 maybe? Of course ya'll have to make the best choice for you and your hubby :) I have nothing at all close to this to base my decision off here.

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  4. My thoughts are way, way, way confusing in my own head about CCS/PGD without the added "what would the GC do/want?" scenario... I can't imagine dealing with all of that.

    I think my two biggest things would be the following:

    1-Will the GC transfer two?
    2- Do your feelings on "abnormal" match CCRMs?

    For the first one, if the GC isn't comfortable with two, I'd lean towards CCS testing, because obviously you want to transfer a normal embryo if this is a one time deal.

    But with that being said are you comfortable with CCRMs rule on testing? I think Julia told me that CCRM requires you to sign off agreeing to discard anything that is abnormal, even if the abnormality is compatible with life. If that situation is okay with you and T, than CCS testing is on the table, but if not, I'd want to talk to Dr. G and the GC about your BEST chance for bringing home a healthy baby.

    These are TOUGH choices no matter how you look at it, but in comparison to the MOUNTAIN of tough choices you've already had to make, I know you'll be just fine. : )

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    1. Yes, they told me all abnormals must be discarded. Regardless of the abnormaility.

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  5. I've been thinking about you sooo much!! I'd love for you to have two kiddos and maybe in the future you can have a GC carry another one, but honestly if it were me and with what I've seen with twin pregnancies, I'd transfer one.

    Unfortunately the risks are scary with twins. I only know of one person that carried to term. Everyone else had various complications, had to deliver early, and even the one full-term, the babies ended up in the NICU for a few days. You don't want your GC to have complications or the babies. You don't need any more fear and uncertainty you've through too much already. *hugs* behind you whatever you decide.

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    1. I'm with Amber on this. Even with all I've known about risks of twin pregnancies and warnings from our RE before, it's only been recently that I started becoming familiar with moms who do have twins and all the things they go through as parents AFTER the babies are born...not all, but so many. It's for this reason, that if we ever do another transfer in the future, it will definitely be an eSET.

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  6. Oh girl! So many big decisions to make! I would do a check to see where you are at peace - that is what you know the Lord is calling you to do! I pray that you get that soon so you can move forward! thanks for filling us in!

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  7. I agree with Caroline. I would talk with ur GC and see how she feels about carrying twins. Once u know her point of you it may make the decision easier. A twin pregnancy can go either way. As we know every women's body is different. I personally know someone who carried twins with no problem and also made it full term. But again everyone is different. Whatever ur heart feels is best for all three of you.

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  8. This is such a personal decision. I lost twins at 22.5 weeks. We don't know if it was partly due to the fact that it was a multiple gestation, but I know that I do not have the green light to ever transfer more than one again. However, I do know many people who have carried twins safely. I wish you the best of luck. I know you will make the right decision for your family.

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  9. This is breaking my heart that you have to ask yourselves more difficult questions. I'm calling you on my drive home to talk through this. Hugs.

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  10. It's such a tough question. If it was me I'd probably screen and transfer one, even to a GC with a history of successful pregnancies (but do check that fine print Amanda mentioned first). One thing I'd like to know is how common problems in twin pregnancies are, in someone who has successfully carried singletons. REs are not the best to answer such questions - all MFMs I talked to are very cautious when it comes to the subject of twins, while the younger REs were much like "it'll be fine", though the more experienced people in my clinic really advocate for single embryo transfer. Can you get hold of an MFM to check on this? I can try to check the literature and let you know if there is something.
    Either way, good luck! I'm thinking lots of you and hoping that, whichever way you go, it will lead to your baby - or babies.

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  11. Wow! Such a hard decision! My first thought was definitely transfer 2. The possibility of you getting a family of 4 made my heart leap! After reading the comments I see the other side of it. Still, if the GC is comfortable with 2 being transferred, I would do it. I have seen more successful twin pregnancies than not.

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  12. Wow. That's a helluva decision. I will say this: we did CCS on our donor egg embryos and we transferred two. We were comfortable enough with the idea of twins (it helps that I am very tall and have the room for two babies, so said our RE) that we wanted to maximize our chances. And as I type this, I am pregnant with a singletons. Despite transferring two chromosomally normally embryos, one didn't make it.

    Personally, I think if the GC is comfortable with a twin pregnancy (or possibility thereof), that's what I would do. I am well aware of the risks of a twin pregnancy, but I don't think a doctor can veto a decision you and your GC make.

    But whatever decision you make, it will be the right one for your family. After all, if you transferred one embie and it didn't take, would your GC not agree to have another one transferred? I admit I don't know much about it, but I've thought about being a GC for someone someday, and I would do it. Just curious to hear what you have to say! Xoxo

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  13. Oh this is so hard! If I were in your shoes (& the GC was comfortable with it) I would transfer 2... but I've always felt strongly about wanting to have more than 1 child...

    Good luck with your decision, I know it's not easy

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  14. In our GC contract we agreed to 3 transfers. First time, we transferred 2 embryos (BFN), 1 FET (BFN), and the third was another fresh cycle with 2 embryos (BFP, finally). Only one embryo took but our beta numbers were so whacky that we suspected a vanishing twin. Prior to the BFP, we were totally ok with the possibility of twins for all the same reasons you're considering but the more time I spend reading infertility blogs, I am so relieved only one took. There are just too many risks and some bodies aren't cut out for carrying twins. I'm not sure how old your donor eggs are but we were comfortable with the odds of chromosomal abnormalities for our age and just decided to let nature take its course.

    Also, I hear ya on the terrible what if scenarios as you go through the contract. That was the worst part for us. All of those potential terrible situations are so hard to think about but once it's done, you'll realize the likelihood of any of that terrible stuff happening is low.

    Best of luck to you guys. XOXO

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  15. Definitely a hard decision to make. In my personal opinion, if you have the additional money for testing, use it. The more knowledge, the better. I am sure you will make the right decision for your family regardless.

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  16. I wish I had something original to add here. As if there aren't enough hard decisions and emotional challenged when dealing with IF. We are getting ready to undergo a cycle with CCS testing. We are praying so hard that we just have 1 genetically normal embryo to transfer but we have thought about what if we have 2?! I think you are doing all the right things by researching and looking at the situation from you and your husbands perspective as well as the GC. When it's all said and done I think it's what the GC is comfortable with and what your gut tells you. Everyone's journey and circumstances are different. You have educated yourself and I believe God will guide you to make the right decision for your family. Keep your faith friend. Sending you love always.

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  17. I agree that you have to do what is best for you! But, you asked WWYD, so here it is...If you can swing it financially, I would opt for the CCS testing and do an eSET. It will reduce the risk of miscarriage/failed transfer for the GC and reduce most ALL risks associated with not only carrying twins but also issues that can present after birth (barring the very small risk that an embryo would split into two of course). More always seems better when we've gone through so much to have children, but there really is not enough said about how difficult having twins can be...I'm only just now learning some truths about this as I have become friends with more women with multiples. I'm not talking about crying or feeding or cost. I'm talking about developmental issues, health issues, therapy, interventions once they're here, and esp. with those born early. Not all go through this, but a lot sure do. Transferring two might result in healthy twins with zero issues (GREAT!), or one healthy baby (GREAT!), or no baby at all at the end of the day though....rolling the dice really. I had no idea the stipulations from CCRM on only allowing 1 CCS tested embryo to be transferred to GC's, but I do think there is legitimate reasoning behind it, so think about WHY they do that. I actually think it's really smart of them, and I love that they aren't turning a blind eye to the risks associated with twins.

    Then there's the finances... $7K up front for the CCS is more money I know, but let's say you did a transfer to GC (without testing embryos first) and it didn't work on the first try...wouldn't you then still wonder if it was a case of abnormal embryo(s)? You'd be right back to scratching your head. How much would you pay for each failed transfer attempt/miscarriage with GC? It's worth considering how much you could theoretically spend on trial and errors you might go through with untested embryos. The chance of it working on the first shot is increased if you're using CCS tested embryos, and although more $ up front in the short term, might save you some heartache and more $ in the long run.

    Lastly, you have 5 embryos. If you test them you'd have more flexibility to decide what to do. If only 1 tests normal, then you won't even be faced with the decision of "risks" of twins really. If none test normal, then you probably wouldn't go through with the GC (thus averting a really expensive trial and error process with the GC)...I'm just assuming. And if you have all 5 test normal (MY HOPE FOR YOU!), then you'd have all the options at your fingertips...transfer one, transfer two, have leftovers for yourself to try again and/or another GC transfer in the future if you somehow are blessed enough to do so. But at least you'll know which embryos are worth investing in and placing your focus on.

    Every time we had a failed transfer, I kicked myself for not doing the CCS testing. Out of 7 good quality blasts, we only had 1 that worked by the skin of our teeth on the last try, and we STILL to this day don't know if it was an embryo issue the whole time or my body. If we had to do it all over again, I would definitely do CCS testing, so when someone asks (whether it's their own body or a GC's) that will always be my answer. Sorry so long...loaded question.

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  18. Oh my... SUCH hard decisions to have to make, Suz! So... If it were me, I would first find out if the GC is comfortable transferring two. If she were, then that's what I would do (but I'm probably saying that because I just had twins of my own after transferring two). If your GC isn't comfortable, then I would lean toward doing the CCS testing. You're in my thoughts sweet friend! XO

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  19. we had CCS screened embryos, and we transferred a single embryo into our GC, at CCRM.

    screen them. begin with your best chance at a healthy baby. doing an eSET with screened CCS donor egg embryo is the best chance you can have.

    sure, GC's can be comfortable with carrying twins. or, the idea of carrying twins. as an IP, I was personally not comfortable putting a GC in a position where she might experience discomfort (above and beyond a singleton pregnancy) or complications. as an IP who had suffered multiple tragic losses of my babies, I was not at all comfortable with the additional risks associated with twin pregnancies.

    one baby at a time is safest! that is a fact... nothing against twins... but you are in a position of choice and planning.

    you could do an eSET with a CCS screened embryo and have a healthy baby. who knows what your life or financial situation might be later on... you might find things have changed and you could do another transfer? or not... but what is your goal? to be a parent. you have an opportunity to do that in a very safe way, so do it!

    that is SO interesting that CCRM won't transfer two donor egg CCS embryos!! is this a new policy for them?

    also, our GC was from Denver, and she was the ONLY GC in her agency's support group that was pregnant with a singleton!! the only one! she said she was so relieved and thankful we only wanted to transfer one! she would have done two, but she was happy to have had an easy, stress free pregnancy and an easy, vaginal birth of our singleton. so many of the her GC peers had lower-weight, early babies, cesareans, bed rest, missed work, etc... twins are a very romanticized thing in our society, but the reality of a twin pregnancy and birth often do not match up with this romantic vision.

    you will make the best decision for YOU! and, it may be to skip the screening and transfer two! my best to you!

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    1. I agree with this comment.

      Interstingly, Dr. Schoolcraft told me recently that he RECOMMENDED that I transfer 2 CCS normals at a time. He said that this is bc of my m/c history.

      My suggestion is to test the embryos. Transfer one.

      Another worst case scenario is that they are all abnormal...I really doubt this would happen, especially bc they are donor. I tested because I needed to know that we were going forward with normals. More chance for a baby. Less chance for a miscarriage. Less wasted time.

      Good luck as you work through all of this complicated stuff. Thinking of you.

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  20. What are CCRMs stats for live birth transferring 1 normal CCS using DE?
    I tend to lean toward testing. My thoughts are (and I'm assuming) that they would transfer the 3AA and 3AB without testing, but what if they were abnormal? I transferred 2 4AAs (without CCS) and had 1.

    But agree with lots of others. Talk to your GC. Transferring 2 may not even be an option.

    And I would think that CCRM has that rule for a reason. They have data backing it.

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  21. I am 41. 5'1" tall and weigh 114 lbs. Last year we transferred 2 normal CCS tested embryos at CCRM and I got pregnant with twins. I carried full term to 38 weeks and had a C section. Both babies were 6' 11" at birth. My pregnancy was uneventful overall but the doctor did tell me he didn't expect me to make it past 35 weeks because how small I am. I am a twin myself and my mom carried us to 41 weeks.
    Looking at CCRM stats for CCS cycles, it does appear that twin rate is over 60 percent if you transfer 2 regardless of age.

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  22. I can tell you exactly what we are doing, which I'm sure you are already familiar with :)
    We tested the embryos (which was a first for us) and we are transferring two... Neither is an easy decision though. As we have racked up $18,000 so far for this transfer with our GC, it makes me think- I think I need to have twins and be DONE! But as the transfer gets closer, I think I am getting more scared of what could possibly go wrong and the health of our GC if she does get pregnant with twins. Will everything be okay?

    I think it is a personal choice and you have to decide what you are going to be most okay with. At first we weren't going to test but then I knew if the transfer didn't work I would be too upset with myself for not testing and just have more questions as to why it didn't work.
    Good luck in deciding what you guys need to do! I know it will be the right choice :) I'm sorry you have to make these tough decisions, but I'm excited for you too!

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  23. Ughh! This is such a hard decision. I've been thinking about this more recently too. Up until a few weeks ago I was all for transferring 2 but now I feel like we might only transfer 1 this next round. Partially because I want to try the protocol you used last but also because I've really started to worry about the complications that come with twins. Don't get me wrong, I would LOVE twins but I'm not sure it's the right choice right now.

    If you test the eggs then I think you have a better shot of pregnancy so you wouldn't need to transfer 2. It might all come down to what your GC is or isn't comfortable with.

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