Sunday, September 19, 2010

The business of IVF

I'm writing again. Got to ride the crest of the wave when it presents itself or I'll end up strolling along the shore for another long bloody year.

Anyway, trawling through this end stage of the book (end stage, end stage!! it is nigh! oh my giddy aunt, I may just finish it yet!), I was struck by some of the things that happened to Steve and me during our IVF prep - which I had forgotten, but remembered as soon as I read what I had recorded (and thank God I was writing this stuff down to help me recall it now for the book) - that really makes me take a step back and see just how convoluted and invasive the business side of IVF can be.  The side that doesn't even take the prospect of there being a baby, a spiritual being, at the end of all this into account.

This is a real uncomfortable thing for me to uncover and confront. I guess I had a whiff of it when we did our IVF in 2005. But I held my sights on the end result as best I could. It was something my cohorts at the time were instructing me to do, and I did it willingly. These were IVF veterans, many of them, who knew far better than me how to keep their heads afloat in this strange world of medicated cycles and white theatre gowns. Funny it's only struck me now, now that I am so far removed from it, that I can properly acknowledge how difficult it really is not to get your head stuck in the processes and the intellectual, financial, nitty-gritty of it all. It's a trap. It feels like a whirlpool where all you can do is keep your head above the water, even if you're being sucked in by the current and can no longer even paddle. Just keep your head up above that water line, if nothing else. A tremendously arduous way to live, particularly if one is balancing IVF "life" with work, family, home and whatever other realities.
It's plain to see now, the geneticist we saw was against IVF. Steve and I were old hats at recurrent miscarriage, infertility, loss and the "waiting game" by this point. But I wonder just how damaging this doctor's opinions would have been to the other IVF candidates who consulted with him. He was not part of the IVF clinic (and I daresay he had a thing against "this IVF business"). Rather, he was
a senior geneticist at the Genetics clinic that became known to us once Steve's blood results showed up his carrier condition (a balanced translocation). I don't know if his gripe was a purist one, or was stemming from perhaps a personal moral issue with IVF - perhaps the advances in his chosen profession had caused a dilemma for him and the whole "playing God" aspect of not only out and out IVF but now this new technology of PGD* - but this guy was hostile as all get-out about us trying it.

At the time, Steve and I had nothing to lose. Well... except the better part of $20,000, that is. $20k that would have helped us right about now, with all our renovations and water/hail storm damage. Do I regret attempting IVF, now that I know it failed us?

Not on my life.

I was provided with an invaluable insight, undergoing IVF. My head was well and truly, firmly jerked back in. And my world was opened up even further. Where once I had a closed view of IVF and what it represented (to me), it did the exact opposite to what I thought it would.

I am beginning to weave it in to my story. Here is the opener, before we start our first cycle, where we have to go visit this Mad Hatter of a retiree aged geneticist (name has been changed, of course) and request he grant us the medical nod by way of a letter to our chosen fertility specialist to say we have ticked this particular box and dutifully done our rounds with the genetics side of things - to prove we understand why/how/what we were getting into.

As always, feedback about this (below) is welcome and invited. Much obliged to those who feel compelled to comment. The excerpt begins just after the doctor asks us how our (deceased for the past year) daughter is doing... he had gone over her post mortem with us only months before. Good start, non?

The meeting went from bad to worse after that. Dr Greenwood all but tried to talk us out of PGD*. For every point he made against the procedure, we had a positive response. We had the financial means, we understood it was very expensive. Yes, we understood the success-failure rates. We were by now very well-versed on our conditions, both Steve’s chromosomal factors and my anti-phospholipid syndrome, which was under control.
“Once you see an IVF doctor, they'll be all positive about it and, well, IVF just isn't all that good," Dr Greenwood concluded about the procedure. I exchanged a wide-eyed look with Steve. We would hope our IVF doctor would be bloody positive about it, because we were!
“Well, we’re willing to discover that for ourselves,” I retorted. “If you could please do whatever it is you need to from this end, to begin the ball rolling, we’d appreciate it, thank you.”
Steve and I returned home, dumbfounded.
“I don’t understand, why would he doggedly push us to reconsider doing IVF?” I asked Steve, quite dismayed that our trip to the geneticist had not gone more positively. “He said it wasn't "that good" and, okay, we more often hear of IVF successes in the media - but why couldn't he focus on SOME positives too? I get that he wants us to be well-informed about the expense involved and that it might not even work, despite how much money we lay down. But, really, did he not see our history?”
“I think he’s just old-school,” Steve offered, shaking his head. “We know what we’re getting into, but perhaps some people he sees are clueless and just starting out when they go for these IVF prep appointments. We’ve gone past that now. He was just spinning the company line. This is business for them. I’d say they have some duty to inject a bit of reality about the success rates of IVF. That’s all.”
Regardless, we now had to rethink our plans that afternoon, yet again. If Dr Greenwood was not forthcoming with a recommendation to the specialist that we were viable candidates for PGD, our hopes would be stalled. I was so fed up with miscarriages and not knowing which pregnancy might be our next normal one, like Ella. I dreaded the wait to find out if we would ever have another viable pregnancy ever again, before time – and my natural fertility – ran out. It was obvious, with the miscarriages since Ellanor had died, that the universe was not going to dish out an “easy ride” to success for us simply because of our trials so far. It was almost as though it was taunting us, daring us to try IVF now.
The knowledge that there was some way of testing the embryos before transferring them in the hopes of one implanting had become a viable option. I had no more strength to continue, blindly losing these beginnings of life before they had even properly begun. And while Ellanor had become our guiding light, the very reason Steve and I continued to remain hopeful of becoming parents again, her death had also left us in a state of flux. We agreed we could no longer go on treading water for an indefinite length of time.
“Well, what do we do?” I asked, hoping Steve knew.
“I think we keep working towards doing IVF,” Steve replied with certainty. “If this guy doesn’t agree, we’ll go to someone else. All we need is the letter.”
“And what about contraception?”

Since Christmas, we had decided to avoid any more natural pregnancies. The sobering shock of having to terminate the most recent pregnancy while there was still a slow, but abnormal, heartbeat really had changed the way we wanted to work with our fertility issues. Contraceptive measures had been the wisest and kindest thing to do these past weeks, despite how very counter-productive it seemed.
“I’m game if you are,” Steve said, staring at his shifting feet.
I looked at him. The Geneticist had warned we could be waiting up to six months for a test to be made up from Steve’s sperm, before we even went on the waiting list for the actual commencement of our first IVF cycle. I couldn’t wait that long without trying to conceive a baby with him, I knew it. And I was so relieved that it was Steve’s suggestion to forge ahead. Who knew, perhaps we would be ever so lucky to become pregnant with a healthy baby before even starting IVF.
“Okay, so we try to conceive again naturally, for at least half of these months we’re being forced to wait,” I suggested. Steve nodded decidedly, holding his hand out for me to shake on the deal. We shook on it and laughed, happy to have reached a decision.
It was no longer strange for us to consider this baby-making business a job, a contractual agreement. It had become something of a life within itself, the third wheel to our relationship. We had acknowledged its presence for so many years now and included it in all our holiday-making and workload decisions, just like we would a member of the family. It was one of our team, although I know we both secretly hoped it would meet its contract so we could make it redundant, already.
“So if we do have another miscarriage, we still have time to recover before I have to start stimming,” I said, taking some of my newfound IVF terminology for a spin.
“What’s stimming?”
“It’s what the girls on the forum call it when you start the follicle stimulating hormones part of the cycle,” I replied, feeling a bit excited for the first time about the prospect of going into a medically controlled state where, if the result was a pregnancy, we would be assured of an embryo that would result in a baby who was free of our genetic fucked up-ness.

*Pre-Implantation Genetic Diagnosis:  basically, a very invasive procedure on the fertilised eggs - embryos - whereby several cells are biopsied from an 8-cell blastocyst and analysed for genetic markers. The embryos go through an incredible amount of, well, 'invasion'... After the cells are extracted, miraculously the embryos continue to divide, replenishing the lost cells. If they continue (and are normal, according to the results of the analysis), they are either frozen for a thaw cycle or transferred to the female, where hopefully they implant. From then on, it's pregnancy as usual. In an ideal world.

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