Still completely torn about CCS and it's time to decide - minor update

pblge

*loss briefly mentioned*

After bloodwork and u/s were done this morning the doctor (terrible bedside manner!) said that I needed to decide about doing CCS right then and there. I'm not particularly lucid that early in the morning and I was stunned--really thought OH and I would be able to have more conversations about it once he joined me in town (tomorrow). We had also been thinking that we'd base it off how many eggs we got. Wednesday we were told 30 growing follies, yesterday 17, today 10!!! So that's not particularly helpful. If it's 10, then I'm a lot less interested. I also had a m/c of a chromosomally normal embryo that wouldn't have been screened out by CCS, so this doesn't seem the guarantee against m/c it might to others. To complicate matters, the doctor said that sometimes it means you can't transfer right away when doing CCS, if the embryos aren't blasts by day 5. Since I live six hours away, this is a bigger PITA than it might otherwise be. Obviously the biggest downside is the money, as we don't have $5000 sitting around on this (we're insurance rich and cash poor), and would have to put it on a credit card. In the end I was able to postpone the decision a bit longer, filling out the consent paperwork but NOT making a payment for $2000 on the spot like they asked me to. I've been asking myself if it's worth $5,000 alone to be guaranteed that I won't have a Down's baby, but I'm not sold by that thought. I'm almost 37, so the risks are higher, but I figure we've had such crappy luck I have to get lucky sometime, right????

I know this has been asked here before, but I'm still hoping one of you brilliant ladies will have something brilliant to say on the topic. I'm usually fairly decisive, but I just can't seem to get past this one. I don't like either choice, and I'm pissed off that I can't be a normal woman who doesn't get faced with this sort of choice.

Any thoughts appreciated.

UPDATE:
So the nurse called with some more thoughts. One thing that got thrown into the mix is that they'd likely only transfer one screened blast, but perhaps they'd transfer two if unscreened, depending on grading. Not really sure what to do with that information. She also said that we could go ahead and arrange for the CCS, but tell them that we don't want to do it if there are only a few embryos on day 5. So, for example, we might say only do CCS if we have 7 or more blasts. She also upgraded the follie count back to 17, so I have no idea WTH is going on there. E2 is at 2700.

Still debating. Thanks for your input, ladies!!!

scooteriste

I can only imagine your shocked face when the doctor tried to put you to a decision on the spot. Ugh. Poor form. Given your situation the way you laid it out, and especially where the doctor is asking *you* to make the call, I'd say it's probably not medically necessary.

Here's my thinking... In a situation where one or both partners have chromosome problems or issues with repeat loss, I would do PGD/CCS no matter the number of embryos. Or, on the flipside, if someone had 20 embryos and will probably never need another fresh cycle, I'd have them tested just to be sure. Maybe others can chime in with their decision processes, but as a person with an average of 10 eggs at ER, under 35 and no history of RPL, it wasn't recommended for us by any of the docs we talked with.

jaztastic

When you don't have it to spare $5000 is a lot of money. So I understand 100%, the dichotomy between if it's worth it or not. But stepping back and trying to take money out if the picture, I had to make the decision based on what would give me the best chances of success. Unfortunately none of the IF procedures guarantee anything, but in combination of treatments and trial and errors we hope that eventually there is a positive outcome. Even though my decision was to have the testing was a little more needed because of a known genetic condition, i still used the same logic to make the decision. If money wasn't a factor, would I have this done? My answer was yes, because I would rather be able to say I really did everything I could do, every test, every procedure and accept the outcome. Rather than always question if things would have been different. Naturally if things go wrong and you have a mc you will question if it was worth it, I know I did several times. But you have to convince yourself you are making the best decision and accept that there are no guarantees either way, just better odds. Wishing you the best!

airidh80

It's such a hard decision to make. Our first RE wasn't a fan of CCS testing for everyone. He said to us, "sometimes on Day 3, the embryos don't look good, and then I offer CCS testing. But that's not a good day when I make that call." So guess what happened to us on Day 3. My DH was in favor of just rolling the dice, but I had a bad feeling about it. One of the embryos only had 42 chromosomes instead of 46. It likely would have never survived. But one of them had just one missing, and could have resulted in either a late-term loss, a medical termination, or a very early death. So in that case, CCS was definitely worth the 5500. I don't say any of this to scare you. What happened to us was unusual for my age. For me, the cost of CCS was worth the peace of mind. No, it doesn't guarantee a healthy pregnancy, and you have unfortunately already learned. And plenty of people do have perfectly healthy children without CCS. There's no right or wrong answer here. You just have to weigh the pros and cons of both sides, and make the choice that feels best to you. *hugs*

vibeee

Please do the screening if you can.  Just had a friend terminate IVF baby at 16 weeks due to trisomy.  Money is money.  You'll never forgive yourself if something goes wrong and you didn't test.

I know it is a personal decision but if you can do it I would.

indianaalum

Opinion from the other side: PG  and sensitive topic WARNING

I just want to share my story right now because it might make a difference in this decision for many of you...

I am 41 and did IVF. I am currently pregnant through IVF. 4 high quality eggs (Ranging from 5AA-2AA) were  tranferred, 2 took, and one never developed  a heartbear so I am carrying a singleton. My RE never mentioned PGD or CCS. Frankly, I didn't really have the extra money lying around anyway, so we never gave it a second thought anyhow that it wasn't brought up.

I am currently 15 weeks pregnant and found out from the NT Scan that I have a 1:45 chance of having a child with Down Syndrome. I am currently awaiting the final results from the Panorama test to determine whether the baby has Down Syndrome. This has been the most stressful 3 weeks of my life. I remember thinking the 2WW was horrible, but this 2WW for the Panorama results (which tests for Down's and other chromosomal issues) is way way way worse to me because the result could be that baby has Down Syndrome or something worse that could actually lead the baby to not make it full-term. 

I will  absolutely love the baby no matter what as I clearly tried very hard to get it, but I would be a liar if I didn't say I am scared shitless and  I have honestly thought "God, I wish I had spent the money and done CCS or PGD" because I wouldn't be having this scare right now thinking the baby has Down Syndrome, something worse chromosomally, and all the medical complications that can possibly go with any disorder.

It's a hard decision, so I figured I would share my story. I want people to know I am extremely extremely grateful that i am pregnant and will love my baby no matter what, but PGS and/or CCS might have prevented the heartbreak I have felt the last couple of weeks and could possibly feel in the future depending on the results.

missmarypoppins

indianaalum said:

Opinion from the other side: PG  and sensitive topic WARNING

I just want to share my story right now because it might make a difference in this decision for many of you...

I am 41 and did IVF. I am currently pregnant through IVF. 4 high quality eggs (Ranging from 5AA-2AA) were  tranferred, 2 took, and one never developed  a heartbear so I am carrying a singleton. My RE never mentioned PGD or CCS. Frankly, I didn't really have the extra money lying around anyway, so we never gave it a second thought anyhow that it wasn't brought up.

I am currently 15 weeks pregnant and found out from the NT Scan that I have a 1:45 chance of having a child with Down Syndrome. I am currently awaiting the final results from the Panorama test to determine whether the baby has Down Syndrome. This has been the most stressful 3 weeks of my life. I remember thinking the 2WW was horrible, but this 2WW for the Panorama results (which tests for Down's and other chromosomal issues) is way way way worse to me because the result could be that baby has Down Syndrome or something worse that could actually lead the baby to not make it full-term. 

I will  absolutely love the baby no matter what as I clearly tried very hard to get it, but I would be a liar if I didn't say I am scared shitless and  I have honestly thought "God, I wish I had spent the money and done CCS or PGD" because I wouldn't be having this scare right now thinking the baby has Down Syndrome, something worse chromosomally, and all the medical complications that can possibly go with any disorder.

It's a hard decision, so I figured I would share my story. I want people to know I am extremely extremely grateful that i am pregnant and will love my baby no matter what, but PGS and/or CCS might have prevented the heartbreak I have felt the last couple of weeks and could possibly feel in the future depending on the results.

I'm so sorry you're going through this. You are in my thoughts and prayers ((hugs))

chucktgirl

CCS (or PGS or PGD, etc.) is a hard choice on its own, without even considering $$. My first two IVFs we did testing and we only had a couple of embryos to send. ALL came back as non-viable. So, we were out $12,000 and went through two whole cycles, only to transfer nothing. That was rough. The next two IVF cycles we had a different RE who suggested that we didn't use CCS, simply because we had so few embryos and it wasn't worth it to him, the small percentage that the testing could cause damage. We had no money, so that made our agreement with him easier. We did two transfers and nothing stuck. Now, for my fifth IVF and my fourth RE, she strongly advises against testing, and wants to do a Day 3 transfer, in hopes that the embryos will be happier growing inside of me rather than outside. It's all a gamble. I hate it. If we had unlimited money I kind of think I would still choose to test them before transfer. I'd rather know sooner rather than later if my pregnancy was a viable one, or worse, if I'd have to make the difficult choice to terminate several months down the line. But we are out of money and also reasons why I can't produce a decent egg. So, we are choosing to trust our doctor's opinion this time. It's crazy scary, and a difficult individual decision. Just make sure you make the choice you are most comfortable with. That's all we can do with decisions like these. Good luck!

pblge

Thanks to everyone for their thoughtful replies. You ladies made a very good case for doing the testing, so we're planning on doing it with one caveat--we're considering giving a minimum number of blasts to test--so don't do it unless we have 6 or 7 or something. Still figuring out many we want for this. I did retrieval this AM and they got 33 eggs (!!!!!!!!!!!!!!!!!!!!!!!!!!!!!), although I'm sure many of those won't be mature. We'll give this some more thought after the fert report tomorrow.

@indianaalum - I'm so sorry for what you're going through. I hope you get good results in a few days. 1:45 is still a pretty low risk!! ((hugs))