Monday, March 2, 2009

What might have been

Note: I was hesitant to post this as it is possible someone from my clinic reads my blog. My apologies in advance if I offend anyone. I have no doubt that the people at my clinic have the best interest of their patients at heart.

When I did my first IVF cycle, the most recent stats available for my clinic were from 2004. At that time, my clinic had a 56.7 live birth rate for people under 35 and CCRM had a live birth rate of 58.5. I was one week passed my 38th birthday. My clinic's stats in my age group didn't quite measure up, but since my clinic only did about 25 cycles while CCRM had over 130; it was safe to assume that it was just a statistical difference (the reliability range overlapped with CCRM). Additionally, their rates were much more comparable in the pregnancy rate per transfer category.

I signed up for 3 cycles with my clinic - two being early miscarriages and one being a BFN. By the time we went for our fourth and last-chance-with-my-eggs cycle, I was comparing DE cycles only and still felt pretty good.

Today I was thinking about our up coming cycle and on a whim decided to check out the most recent stats. I shouldn't have looked. While CCRM has continually (from 2004 - 2007) had a live birth rate in the low 40's for women in my age group (38-40); my clinic has hovered around the mid to upper 20's - even taking a hit across all groups in 2007. I am now led to believe that our chances of success would have been about 1.8 times greater had we gone to CCRM. It feels awful to think things might had been different if we had tried a different clinic.

Ok, Kami, but what about the live births per transfer? Those rates actually stayed pretty comparable and you always made it to transfer so isn't it fair to only look at those rates and let yourself off the hook? Maybe. I just don't know. Perhaps my clinic isn't as good at stimulating older women and so cancels more cycles. Perhaps CCRM preselects their patients. I just don't know. My suspician is that CCRM is just better at stimulating older women since when you select for diminished ovarian reserve they still have around a 40% live birth rate and about a third of their patience are diagnosed with diminished ovarian reserve (something I was not diagnosed with until the DE cycle)

I have often had the shadow of regret hanging over me for not going to an RE sooner - for believing our miracle pregnancy in 2004 wasn't just a fluke. Now I am left feeling that I made the wrong decision for at least not trying CCRM for our last-chance-with-my-eggs cycle in early 2007. Would that have translated into a live, mutually genetic baby for us? We will never know. I'm not a statistic. I'm not 100 cycles or a hundred women. I do know that right now I feel like I have been kicked in the stomach. Although not intentional, I feel like I have been the victim of fraud. I feel cheated.

One of the things that has always bothered me about moving to DE is that I never had proof that my eggs had abnormal chromosomes which I understand to be the best indicator of poor quality eggs (please correct me if I am wrong!). PGD was too expensive and wouldn't have increased our chances of a viable pregnancy and in at least 2 of the pregnancies (Ernest and my first miscarriage) the karyotype came back normal (the miscarriage was normal female so it could have been my cells tested but the tech stated "probable placental villi" in the report so she thinks she got the right cells). The second miscarriage did not have a reliable karyotype.

Of course, normal chromosomes didn't do us any good with Ernest. He was non-viable outside of the womb because of a birth defect that caused the preterm labor. We were told it was just bad luck at the time.

So the questions continue to swirl around in my head: Wrong choices? Wrong clinic? Bad eggs? Bad luck? Yes, for those long term readers, I have been down this road before.

Just to rub salt in the wound, I feel guilty having these regrets because I have LB. Even now she is holding a chunk of crusty bread in one hand and a chunk of apple in the other - taking turns shaving off little bits with her bottom teeth (every once in a while, I have to go pull a too-big bite of bread out of her mouth to wails of unhappiness until I put a small bite back in) and it is terribly endearing. There is no doubt that I love her with all my heart. And there is also this.

I don't think this (this weight, this sadness, this cloud of regret) will ever go away completely. Like the loss of a child, the grief is always there it just punctures your life less and less often with less and less force. Unlike the loss of a child, it could have a too-big impact on LB if I am not careful. (I say "too big" because everything I am could have an impact on LB since everything I am impacts the way I parent.) I don't know what to do about it either. Perhaps I am hiding it from her well enough at this age and by the time she knows any differently, it just won't matter that much to me anymore.

As long as I am having a poor me moment, I will also say that it sucks that it was male factor infertility that brought us to the table in the first place. I am convinced we would have had children easily at 34 had we not had male factor issues.

Where is the road map to tell me how to get on with my life after failed infertility treatments, a dead baby, and mistakes in judgement and be happy that we were successful with the next best alternative? When and how is it ok to grieve what you didn't get while you are parenting the miracle that you did get? When can I be selfish and let the tears flow and when do I need to pretend it doesn't matter to me at all? What about those of us who still feel like failures sitting in the waiting room of our fertility clinic even though we have successfully found a path to parenthood?

I don't know, but I am done with self pity for today. Brad will be home from work soon and poor LB has been too neglected. I promise my next post will be much more positive. I'm off to see if nibbling on baby toes and blowing on a baby tummy will lighten my mood a bit.

Update: Please see the follow up post.

14 comments:

Leah and Maya said...

See what going in for another cycle will do to you, I know its always there but it really brings it back to the surface when the time draws near. I doubt we will ever know the answers, and I had normal chromosone testing too, and I was in my freaking 20's still, so who knows, did they say how many embreyo's they transfered in your age group? there are alot of doctors that transfer alot and then take away any extras, sounds terrrible doens't it but that way they get good stats. LB is perfect, and hey you got to live here in the US the whole time drinking good water. ha ha!

Me said...

I am so sorry you're still hurting. I doubt though that this wound will heal too quickly.

However.

Thank you for this post.

My biggest fear about infertility is not childlessness but regret. We began trying over 3 years ago but are just now finally getting around to IVF - and only because we're getting some financial assistance. What if this one fails. Will we continue to twiddle our thumbs while my ovaries become even more stubborn and useless? Will we let money be what delays us from taking the proactive steps necessary to "resolve" our IF? Will we procrastinate so long that I will some day look back with regret at the choices we've made?

DE Mommy said...

Now might be a good time, before LB gets any older, for a good, supportive, on-going conversation with a therapist who focuses on infertility and has some understanding about DE.

I want you to happy and healthy parent, and I do think your instincts are correct that LB is going to pick up on your ambivalence-moving-into-grief sooner rather than later.

A good therapist will let you safely grieve what has happened and keep it from affecting LB.

Many hugs and a lot of support.

Mrs. Spit said...

You can be as negative as you like, you can ponder imponderabilities, think about what was, I'll still listen. That's what I'm here for.

Kami said...

Leah - you are right. I think the trip to the clinic was the start of my foul mood.

Me - I hope you are successful and you won't have regrets.

DE Mommy - Maybe it is time to revisit my grief counselor

Mrs Spit - Thank you for listening.

Lorraine said...

Oh, this post really hits hard for me. I have been peering down that road not taken for the last few weeks and all it has brought is guilt and anger.

What if I hadn't believed my OB when she said I just needed to keep track of my ovulation? What if I hadn't wasted all that time with useless IUIs? What if I had gone to a really well-known clinic right off the bat, instead of just relying on my OB's first recommendation?

If I had come to any of these realizations even three or four years earlier than I did, I might not be wondering how long it takes to recover from a late miscarriage now.

When I think about why I don't feel comfortable with donor eggs, it's about the relationship of my daughter with her siblings. I guess it's easy to look at someone else's situation and think that if I had a DE child it would feel right to have another. That there would be some parity in the family dynamic, even I myself always regretted not having the biological connection.

So much is tied up in the overall equation - trust in advice you are given, trust in the choices you have made, if love can be quantified, what regret does to the future. I think DE Mommy's advice is probably good - can you see a therapist just to clarify the issues? I have no doubt that as time goes by you will be so thankful that you chose this path, that as years with your LB go by you won't be able to imagine any other way. But I can see that getting to that point might not be the easy part.

Sky said...

Kami, since you're on the lower age side of CCRM's "older" population, have you considered doing a cycle there with your eggs and CGH testing?

From my experience (and that I've heard from others), CCRM definitely doesn't cherry-pick patients. They even offered a cycle with my eggs last August (knowing I was 41 1/2 and that my only IVF cycle was cancelled due to horrible response). My thought is that their protocols are excellent but that their lab/embryology protocols are outstanding. And that's what appears to make an enormous difference - women who've never had blasts previously, get blasts from CCRM.

I know it's crazy-expensive (25K for a cycle w/CGH)...just a thought.

For the record, I have regrets (as most of us do). I wish I'd gone to them for my own eggs cycle 3 years ago. Or at least, I wish I would have never spent a single cent on my crappy eggs last year and not been talked into trying by old RE.

Ugh! So many ifs!

Peeveme said...

Wow I'm right there with ya (mostly). I know for a fact that my first Re (who had me do 6 or 7 clomid cycles before moving onto injects- despite my asking to move on) cost me a genetic child. Am I mad...yes when I think about it. So I try not to think about it.

I only did 2 IVf's with my own eggs. I had to choose between doing another cycle or two with my own eggs with a possible success rate of.....well...little to none or move onto a sure thing. I moved on. Was I 100% sure it was right? Not really. But I wanted to be pregnant and have a baby more than I wanted to try again with my own eggs. And just becasue I didn't know it was 100% "right" I don't think I made the wrong choice either.

It's not a matter of right or wrong. For me it's a matter of could it have been different? And by different I mean "Could I have had a genetic child?" I don't know for sure but I take comfort in the stats which were less that 15% for me.

I did the best with the information I had at the time. That's all I can do.



I try to look forward and not back. Knowing what I know now I would have been more aggressive earlier. But I can't go back.

When I start to doubt I just focus on the fact that with my own eggs we only had disappointment (costly disappointment). One donor cycle and we have one healthy pregnancy going on and 7 frozen blasts. That alone tells me my eggs were the cause and the stats are against me ever having another genetic child.

Forgive yourself, my dear.

Lanie said...
This comment has been removed by the author.
battynurse said...

No advice really. Just wanted to say I was thinking of you and send a hug.

Geohde said...

Ah, Kami. I have no sage advice other than that there are lie, damn lies and the way clinics do things to make their numbers prettier. But nothing changes the 'what-if?'
xx

J

musicmakermomma said...

I am feeling right along with you girl! I am plagued with doubts about if I should have done the 3x option here, or just gone to Seattle or even CCRM...crazy making stuff. Also the whole donor egg thing - I am basically taking their word that my eggs are crap (although my numbers certainly support it). Don't know if a different clinic would make me feel better or not - must say the new nurse is very attentive and has called more to make sure I am on track. Hopefully you will get a good one too!

Lisa said...

Kami - I have to, once again, thank you for posting with such honesty! You continue to elaborate on those things that I fear and it helps to see that others do as well.

FWIW, and, I know everyone is different, but, we did a phone consultation with CCRM before going back to DE as our option and was told that there was no reason or us to cycle there - that we'd done everything we could and it was time to move on to DE.

Anonymous said...

Wow! You are hurting. I have hurt so much too and have been so angry as well. (I turned 43 in Jan) I feel especially bad at getting angry at my 75 year old dad because he made the comment, trying to comfort me, that he knew how much I wanted a child but that if it didn't work out, life was full of so many other joys. Huh? I blew up at him because he doesn't understand the first thing of what we are going through but then how can anyone that has not/is not going through this (Plus, he lives across the Atlantic Ocean)? Finally, about a month ago, I saw that I simply had to stop being sad and being angry. I had to be very, VERY glad for DE! If it wasn't for DE, I would be hopeless at having my own child. We are even going to need DS because my DH has low sperm count. The DE transfer is set for this May. I have to admit that I've even bought a couple of stuffed animals and uni-sex baby clothes (on sale!). Well, I felt like it so I did and they are tucked away in a drawer. Kami, you are so lucky, LUCKY, to have a LB - Little Baby! And she is all yours and your DH's! Maybe you just need some good sleep ;)? By the way, for those who need a chromosome study, in Spain, it is very cheap!!! 280€ per egg and they study 9 chr. - the most prevalent. Also an XY study is about 600 euros. (I live in Spain). I did my one and only IVF here and of 11 eggs, 3 made it to 5d; 2 had many defects (both with Downs and other stuff!), 1 was very good and transferred but BFN. Am not fooling around with that again at my age and we have moved onto DE. Have been trying since I was 37 so this has been one hell of a long road and I was soooo ignorant thus the anger!!! at myself. I could write pages, so I'll stop here. A big hug!