January 12, 2009

6 Years, $100,000+, Hundreds of Needles, Countless Tears

And still no answers.

We got our CGH results today, exactly 7 weeks to the day from when the cells were sent off. Of the 10 embryos that were biopsied, 6 were abnormal. The other 4 were "no results."

I was prepared - as much as one can be - to be told that all 10 were abnormal. I was prepared to be told that only 1 or 2 were normal and the rest were abnormal. I was not prepared to be told that we still have no answer for 40% of them.

All throughout this process, I kept telling myself we might not get a baby, but at least we would finally have an answer, at least we would know why. But we still don't.

I suppose having 6 of the 10 come back abnormal seems like an answer, but it doesn't feel like one to me. I know the reproductive system is inefficient, I know a lot of embryos that are created are abnormal even among normal, healthy couples who don't need reproductive assistance to have a baby.

RE didn't really have much to lend to the results, either. He said if he was a betting man, he'd bet at least one of the four "no results" ones is normal. But then again, when I first counsulted with him three or four years ago, I'm sure if he was forced to bet on our chance of success, he would have bet we'd have a kid by now.

He did say they could attempt to retest the four free of charge. But that would involve thawing them, re-biopsying them, re-freezing them and then ultimately re-thawing them again if any of them are normal. That's a lot of stress to put them through, so on the off chance that one of those four is normal, I don't want to make them go through that.

As crazy as this sounds, I've never felt like a mother more than today. I feel so fiercely protective of those embryos. They're not just groups of cells - those are our babies. I will attempt to get pregnant again by transferring them, knowing the odds are it won't end well. But deliberately going through all of that, risking the heartbreak - it's not really even a choice. It's just what I imagine any mother would do.

However, before we do a transfer, we'll most likely be heading back to the clinic to do one or two more rounds of retrievals. That's because there's another wrinkle in all of this: I'm about 95% sure that my IVF coverage is going away as of June 1. Since the retrievals are the most expensive part of the process, I'd rather use my coverage for those.

RE agreed that that was probably the best approach. If we did a transfer first, I could end up with another pregnancy like the summer of 2007, where I made it to 10w5d with a pregnancy that had an unsurvivable chromosomal abnormality. If that were to happen again, by the time my body would recover and be ready for a retrieval, June would already be here and my coverage could be gone.

We will definitely do CGH again, because even though it didn't give us any answers with regard to "normals," at least it let us know some of the ones we shouldn't transfer back. However, I still need to talk with RE about exactly what kind of approach we want to take. I think I remember a blogger (please forgive me for not being able to remember who - I'm still kind of foggy brained from the surprise of all this) who had the polar bodies of her eggs tested rather than the embryos themselves. We may take that approach next time around to see if we can get more information about whether it appears to be an egg issue. Maybe that would also create less "no results" outcomes, though I don't know that that's the case, it's just a hope on my part.

Well, there is a Kleenex box keeping me company on the couch and a pizza in the oven that is soon going to be offering some tasty (albiet temporary) comfort, so I probably should get going. You'd think after six years of sucky, heartbreaking news, I'd be better at dealing with it. But it turns out that numbness I thought I'd developed to heartbreak and disappointment is only skin deep, because underneath, it still hurts like hell.


MrsSpock said...

Ugh. More questions than answers suck. More retrievals. Less insurance. More uncertainty.

You deserve a hug indeed.

DAVs said...

I'm so so sorry for this. Why do I keep seeing these crappy ambiguous results from CGH??
I'm glad you have pizza, Kleenex, and of course your DH to comfort you.

Not that you want to hear the positive (or really feel like there are any positives) but here's what I see: 1) the no results are not abnormal for sure and thus like you said, will be transferred.
2) You have infertility coverage! Even if only temporarily, that fact that you have that is immense. You've already spent so much money so at least you can do two more retrievals without the enormous financial burden, right?
3) Two more retrievals will have to equal more embryos to work with.

So that's something, right?

But I know that doesn't lessen your pain right now. And for that, I am so so sorry. Big hugs.

Polly Gamwich said...

That news is VERY disappointing ... when all you want is answers and all you get is questions - it's very painful.

Just so you know, it was me who had the polar bodies from the oocytes biopsied instead of the embryos (at a SIRM clinic). After two ER's we had 6 mature eggs for CGH testing (they needed to be mature - as only a mature egg has a polar body - that's actually what the difference is between immature and mature eggs). Of those 6: 2 were normal (thank God), 3 were abnormal, and 1 was inconclusive.

When I asked Dr. Schoolcraft if we could do CGH on the polar bodies of my eggs he said that he could, but that I was the ONLY person who had ever requested it. Tell him I said "hi" if you request it.

I'm sorry you're going through this nightmare ... but I agree - try to get those ER's in before June. And be prepared that they will go SLOWER than you anticipated. I tried getting 3 in in 9 months and wasn't able to. If you need to ovulate between cycles (because your protocol starts at positive LH surge - ask for Clomid the cycle you want to do the ER and you'll O sooner)

And I agree - I'm no betting woman, but I too would put those exact 4 in during a transfer (that is, if you don't have other normals to work with ... which you will ... but when the day comes, I'm willing to be 1 or 2 of those are normal)

Anna said...

Oh Rebecca, I am so sorry. Just want to send you some hugs. And chocolate.

Sue said...

Argh. I keep hearing this result from CGH. How awful! I think it is a great idea to do a few more retrievals, though. As much as I know it isn't fun - it is a GREAT idea. There will be at least one normal from that big group! And, like others have said, those "no result" very well can be normal. Hang in there. I always think I am getting numb too - until I feel like my heart is being ripped out again.
I'm curious what kind of insurance you have because I just got great IVF coverage and CCRM takes it, but the lab and surgery aren't covered! (which is ridiculous) I was so bummed!

kayjay said...

I'm so sorry CGH didn't give you the answers you were looking for. It's always amazing that we prepare oursevles for all possible outcomes but then the actual results come in and they're somehow a configuration that never entered into the realm of thinking. I think that you're doing the right thing and cycling while you still have coverage and you'll maximize your chances when you finally do your FET.

Anniep said...

{whine} All that waiting for 4 no results?!?! {/whine} I do agree that at least knowing that 6 were abnormal is def. good to know (sucky, but still...). I wonder why there were no results??? Can you get a copy of the info they have on each embryo? On ours they had specific info, embie 1 had an extra chromosome on #18, etc.

*sigh*. This sucks.

Cassandra said...

Sorry to hear about the results. It sounds like you're making exactly the decision I would make to maximize the insurance benefits while you can.

Wishing you the very best of luck!!!

Silver said...

I am the blogger who had her polar bodies tested. I'd be more than happy to "chat" to you about it through the ether - and about what the consultant at our other clinic said about egg quality both chromosomally and otherwise (my one "normal" egg led to an embryo that behaved much like our other abnormal ones - slow growing). Just let me know when you feel up to it and if there's any particular questions. Sounds like we both ended up with less answers than we'd like - I'm so sorry.

Nic said...

I'm so sorry that the results weren't what you hoped for. You deserve some fucking good news for once. I think that your plan to do a couple more retrievals while you still have insurance is an excellent one. And I will be browbeating the universe meantime to make sure you do get some "normals" to choose from. xox.

Linda said...

I'm a bit late in my comments, but I just wanted to tell you that I so know what it's like getting the no results from CGH. For us, 15 out of 21 embryos made it to blast for biopsy. Out of the 15 blasts, CGH determined that 8 of them were abnormal and 7 were no results. I was devastated, not only about the abnormals but also about the no results. I'm gearing up for FET #4, hoping that my re-biopsied blasts are strong enough to make another thaw and implant. Sending you a cyber hug...