Monday, February 20, 2012

hot under the collar

In our house, we listen to the radio a lot. We exclusively listen to the Canadian Broadcasting Corporation (CBC). On Sunday, a program aired a piece about egg donation. In the midst of my busy Sunday morning, I happened to be listening at the right time. I was very intrigued by the fact that the CBC was doing a piece on this and was eager to hear what it had to say. The title of the documentary was "Wanted: Egg Donor in Good Health", which you can listen to by following this link. It's about 30 minutes long, so you may not be able to hear what this journalist has to say about egg donation in Canada, but let me give you a synopsis.

The author basically depicts the dark side of egg donation in a country where the purchase of gametes is illegal. Using an extraordinarily biased sample, she depicts egg donation as an abuse of donors' generosity, at the expense of their health. She also lurches to the conclusion that severe OHSS is commonplace. Of course, her story is built on the 15 women who contacted her to talk about their harrowing experiences as donors. What about the hundreds or thousands who didn't contact her to talk about their fairly pedestrian experiences? As you can see, I was incensed by documentary, and have since written a letter to express my displeasure. I have included it below.

As the letter says, it was clear that the author focused on medical incompetence, which frankly, happens everywhere, and in every field of medicine. At some point, a bioethicist comes on and says that we cannot look at human beings as a collection of consumable parts, or something like that. When Mr. A and I listened to it together later that evening, he winced and said that he wanted to vomit. We happened to visit Sattva later that day and as I hugged her hello,  I once again was flooded with gratitude for her magnificent existence and for her friendship. We feel sad that we will not get to meet our anonymous donor at SG, and we have not selected her as yet, but we feel enormous gratitude to any woman who decides that donating eggs is something she would like to do. I recognize that there is potential for abuse in organ or gamete donation. But medical malpractice tends not to be the rule, but to be the exception.

I am left feeling very angry that people in my part of the world have listened to this documentary and now walk around with gross misconceptions regarding DE IVF based on this author's work. And I feel like this has the potential to further isolate us and other couples who have or will undergo DE IVF. That is the last thing any infertile couple needs, to further be marginalized because the means by which they seek to remedy an awful situation is portrayed as dangerous and abusive.

The decision to go for DE IVF is not an easy one, folks. Those of you who have made it or are making it right now know this in every fiber of your being. I think back about how difficult it was to see Sattva in any discomfort or pain throughout this process and it makes me ache. It has not been an easy decision for Mr. A and I to accept Sattva's offer. It has not been an easy decision for Mr. A and I to decide to work with SG. But as of right now, DE is considered a safe medical practice that comes with some risks. In Canada or in the US, donors are not coerced into making a donation (although I imagine that sadly, there could be circumstances where this happens). They are accepting the risks as they see the benefits outweighing those.

I could go on, women. I still feel livid. But let me stop here. What follows is the letter I sent to the radio station (with my real name attached: yikes!). It was worth outing myself on this though. I just had to speak out. 


****************************************************
 

My husband and I have struggled with infertility for years because of ovarian failure. We have undergone one Donor Egg IVF cycle in Canada, with the help of a known, altruistic donor (a close friend). It resulted in a successful pregnancy that sadly ended in a miscarriage at 12 weeks. Nevertheless, this experience was a positive one for our donor and for us. We are now working with a US clinic to continue down the path of using donor eggs to have a child. Thus, we listened to your documentary “Wanted: Egg Donor in Good Health” with much interest, but felt very disappointed at how negatively this process was portrayed.
Alison Motluk ‘s piece is a work of journalism and not a work of science. She hints at the fact that her sample could have been biased. It was in fact extremely biased, rendering many of her observations unfounded. This sampling bias leads her to conclude that Ovarian Hyperstimulation Syndrome (OHSS) frequently occurs in egg donation, while epidemiology places the risk of severe OHSS at 0.25% to 5%, depending on the definition of severe OHSS. I can appreciate that her sampling method would have been extremely limited by the privacy legislation in effect across all Canadian provinces. Had she had access to medical records, she might have found that most cases of donor egg procedures that do not involve immediate adverse consequences for the donor. Ms. Motluck does correctly identify that there could be long-term risks associated with assisted reproductive technologies, although science has not yet identified those with any certainty.  
When we underwent the egg donation process in Canada, our medical team clearly outlined the potential risks to our donor, insisted on having her seek private legal council, and had her and her husband undergo a psychological consultation so that she and her husband would understand the implications of donating her eggs. Our medical team strongly advised us to find a donor who had completed her family, as there could be unknown risks to the donor’s fertility, even if those risks were understood to be remote. The medical process described by donors in Ms. Motluk’s documentary was discrepant from our donor’s experience on many levels. During the treatment cycle, our donor was monitored every two to three days and measures were taken to avoid OHSS, even at the expense of obtaining fewer eggs.  The Practice Committee of the American Society of Reproductive Medicine has put out guidelines for gamete and embryo donation (2008), which puts the health and safety of donors as the highest priority in this endeavor. For example, Ms. Motluk’s documentary depicts a situation where injectible fertility medication (gonadotropins) are mailed to a donor who is expected to inject herself, and who must subsequently present herself to the medical clinic only on the day of egg retrieval. This is preposterous: any physician in the industry would tell you that close monitoring is required to evaluate the changes in follicle sizes and the state of the ovaries as they are being stimulated.
Sadly, the documentary “Wanted: Egg donor in good health” zeroed-in on examples of medical incompetence, rather than focusing on a fair assessment of the egg donation process. Listeners were likely left with not only misconceptions regarding egg donation, but also an incredibly negative impression of the overall assisted reproduction field. For couples like us who are already socially isolated in the midst of our struggle, valiantly trying to overcome our difficult circumstances through the medically safe option of egg donation, her message was an assault. The erroneous ideas she left in the minds of listeners will be those we, as an infertile couple, will have to face when we are judged negatively for our actions by the misinformed, and will decrease the likelihood that couples in desperate need of eggs will find a donor. Instead of focusing on the medical incompetence of a few doctors, Ms. Motluk’s time would have been better used debating the advantages and disadvantages of the Canadian Human Assisted Reproductive Act, and how it could be improved to everyone’s benefit.

5 comments:

  1. Well done, miss. So impressed with your letter, perfectly said. This angers me too - as if we don't have enough societal stigma to deal with, without the spread of hysterical half-truths.

    I was just thinking about this today, thinking about "owning" our story, however it might play out. And that adoption is so accepted, in almost a weird ignorant "good for you for saving that poor child" kind of way. But egg donation is still so new, so foreign for most people. If we go down that path I will stand secure in our decision, but the idea of facing judgment from those who have no way to understand what we've been through, really frustrates me, and already makes me feel protective of our future-maybe-child.

    Thanks for standing up for all of us who face this difficult decision.

    ReplyDelete
  2. Perfect letter--restrained and yet forceful. And the program sounds outraaaaaaageous. There's so much sensational coverage of infertility in general, it's just maddening. It's like the "ordinary" stories of people's heartbreaking journeys aren't enough without some hyperbolic drama. Anyway, mainly I'm sorry you had to hear it, because however strong your defenses against bullshit like this must be, it has to be painful to hear yourself described as exploitative.

    ReplyDelete
  3. I became hot under the collar just HEARING about it. Ridiculous. It sounds like the story was really badly researched...and made the conditions surrounding DE sound ridiculously extreme. I'm sorry you were subjected to it. And somehow there's something especially egregious about the fact that you were just going about your business, tuning in on a Sunday. Ambush:(

    But it's an excellent letter, Augusta.

    ReplyDelete
  4. great letter. I am glad you wrote in to them to give them another viewpoint into donor eggs. hoping you find another donor soon. i know i don't stop in much anymore, but I often think of you and hope to someday read about an upcoming pregnancy or arrival of a new family member

    ReplyDelete
  5. The power of your pen is what makes us all come back here post after post. I am so glad you took the time to point it at them - well documented and perfectly clear. I am eager to hear the response you get. You certainly deserve one.

    I wonder about this author. What was the point?

    ReplyDelete