Monday, February 20, 2012

When the news is about you

I had my first radio driveway moment in ages driving back from the very, very pregnant 5 km. You know when you get home and cannot get out of the car because the story on the radio is so compelling? Not owning, as we don't, a car nor until very recently, a driveway - I have not had these moments often. It was the feature on the Sunday Edition of the CBC with Michael Enright that had me pinned to my seat. A story titled: "Wanted: Egg Donor in Good Health" which you can listen to here.

In her feature, Alison Motluck discusses some of the ethical dilemmas of Canada's booming fertility industry - namely the health risks to young women who volunteer as egg donors. She describes add after add on Craig's List of couples essentially seeking tall, attractive, university educated women of an ethnic background matching their own who are free of genetic disease, drug-use and between the ages of, typically 21-31. Further, unstated, these women must be willing to undergo time-consuming appointments, invasive interventions and be willing to inject/consume non-trivial doses of non-trivial medications... out of the goodness of their hearts and desire to help. In Canada, unlike our sister to the south, it is illegal to purchase human eggs. Alison rightly points out that while sperm donors are often mainstream news not to mention the background story of many a Hollywood movie (not to mention PAID), egg donors, who endure ... well let's face it, the comparison is laughable, are largely ignored.

In her feature Alison interviewed 12 women who volunteered to be egg donors, many of them multiple times. All of these women had in common that what they hoped to get out of their donation was the good feeling of having helped someone else. No strings attached. And ultimately all of these women found themselves ultimately of sharing horror stories with Alison.

The problem with egg donation is that the egg donors are assuming a non-trivial risk without medical need of doing so for themselves. The greatest risk is ovarian hyper stimulation syndrome which, in a nutshell, is the risk that the ovaries will over-respond to the hormones, produce too many eggs and result in grave side effects for the woman including drastic fluid retention (one woman spoke of gaining 20 pounds in 2 days) which can lead to water on the lungs, clots, heart problems etc. Some victims of OHSS must actually have the fluid aspirated from them. It's tricky. The higher the dose of medication, the more eggs produced, the greater the likelihood of success for the actual patient a.k.a. the paying customer BUT with more eggs comes greater risk to the donor. The donors are not treated as patients of the clinics (the story implied), are NOT paying customers and therein lies the crack into which many of them fall. In a normal stimulation cycle, doctors hope to stimulate somewhere between 6-12 eggs. The women in this story spoke of producing upwards of 30... 40... one woman reported 80 (this is reaching almost amphibious levels of egg production!!).

Then it got nasty, these women told stories of being sent home by plane the next day despite feeling ill. One woman did not want to get on the plane and was informed by the clinic that the recipient family was "not open" to re-booking her flight and paying another night's hotel (it is legal to cover expenses, nothing more) and that she best go home and see her gynecologist there. This woman even had to trick the flight attendant, who upon seeing her was concerned about her well-being, into letting her onto the plane because she realized she would have to pay a ticket home out of pocket if she did not take the flight. These women spoke of being ignored by the clinics after their donation, trips to their locals ERs, one woman has not had her period in 8 months since she was over-stimulated by her clinic in a cycle that resulted in 60 eggs. The official risk of OHSS is 1-2% for donors yet 100% of the women interviewed had experienced it. A lack of research about incidence of OHSS among donors was alluded to implying, along with the 100% incidence among women in the story, that the rate is far higher than advertised. The report implied that these women are being treated as "bags of spare parts" and painted a picture of cold hearted recipients, clinics concerned only about the bottom line and a shocking lack of regulation. The fertility industry was likened to "the wild west" of medicine.

And I sat there riveted.

Because it isn't often that feature news story on National Radio is about me.

But this one was. 14 years ago, at the fertile, naive age of 23 I was one of those women. I saw so much unhappiness around me and felt such despair at it all that, like the women in the story, I just wanted to help. I wanted to help one person with one concrete problem. It seemed so obvious. I did not want anything in return except (and this is no small thing) the satisfaction of having done one thing to make one person happy. Like the women in the story I was not seeking financial gain (and did not get any). Like the women in the story the risks were explained to me as being small. Like the women in the story I developed OHSS and required hospitalization. I remember the intense nausea. Gaining 11 pounds in 3 days. My distended belly and bloated limbs. I was one of the cases that required needle aspiration to remove excess fluid. I spent 4 days in the hospital. I missed my MSc


Here's where my story differs. The clinic I was donating through was horrified and properly concerned. They saw me as a patient i.e. did not refer me to the ER or to my (at the time) non-existent gynecologist. The had me admitted to hospital immediately. The fertility doctor who was treating my recipient saw me everyday in the hospital. My illness was hugely concerning to the clinic and, I was given the impression, unprecedented. Here's the other thing: I would do it all again. In a heartbeat. If anyone actually wanted my close to expired almost 38 year old eggs. Because although the whole ordeal felt horrifically unfair at the time, at 23 ("I.... just...wanted... to.... do... something... nice... for... someone" I remember sniffling into my beleaguered boyfriend-of-the-time's shoulder), in hindsight at the age of 37, as someone who has experienced infertility, I realize that my "suffering" was trivial in the face of potential gain by the recipient.

And speaking of my infertility, ironically one of the "tests" I had to pass was an interview with a psychiatrist (who awkwardly turned out to be the father of an ex-boyfriend... weird). He assessed me to ensure that I was mentally stable, making this decision of my own free will without expectation of gain. He also asked me to visualize various scenarios one of which was that 10 years down the road I would want a child of my own and be unable to conceive and how would I feel knowing that there was a child who was genetically mine "out there." I remember telling him: "I know the right answer is that I'd be fine with it but really... how the hell do I know? I'm twenty-freaking three (I was more polite than that) but you're pouring hypothetical scenario (I will want kids) on top of hypothetical scenario (I won't be able to have them)... should we really deny these people their chance because IF I want kids and IF I am unable to have them then MAYBE I will regret this???"

And so, time passed and both those hypothetical scenarios came to be. And what did I feel about my previous egg donation? Absolutely nothing. It felt completely and utterly inconsequential. I didn't have trouble conceiving at 33 because I gave 13 eggs away over a decade ago. And I gave those eggs as a time when I felt completely ambivalent about reproducing myself. So no psychological scarring.

What's my point? Ok. Well I'm certainly not saying "well I got sick and things turned out okay for me so egg donation is not an issue...". Alison Motluck's story is an important one. The ethical issues she raises are complex and worth questioning. Perhaps ANY risk to an otherwise healthy person to allow another to reproduce (an act not essential for the physical well-being of the recipient) is unacceptable. I'm not qualified or thoughtful enough to reach a meaningful conclusion of that. I know it was and remains the right decision for me and I cannot speak beyond that. But as I say, it was an important story. The plight of these women should be brought to light. It unacceptable that a human is used as spare parts and then disregarded. There is clearly a lack of regulation in the fertility industry (cough, octomom, cough). But in listening to this story one could be left with the impression that the risks to donors are enormous and that the callous treatment of afflicted donors by clinics and recipients is the norm. Clearly these situations should not happen. EVER. but I wonder what the vast majority of egg donation experiences are like? How were the women in the story chosen? Are they the vast minority or is this really the norm?

But finally my point is this... it was very eye opening for me to be "in the news" so to speak. I tend to have a rather uncritical mind in the sense that I soak in information at face value without really questioning the source or the balance. This story forced me to really think about the reporting and the information in this case. It makes me realize the importance of questioning information critically and evaluating what might be missing, how carefully the information was sieved and sorted before the choicest pieces were presented. It makes me wonder about all the other stories that I have no personal experience with and how I consume those.

8 comments:

  1. Fascinating read. I honestly had no idea. It is a HUGE problem women who do this are not fully inoformed of the risks. Thanks for writing about your experience.

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  2. Interesting.

    I'm often impressed with bone marrow (stem cell) donors. With the current system, donors sign up and can end up giving cells to someone across the planet. And there are no financial incentives.

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  3. Wow. I had no idea that goes on! That is scary. I'm glad your story was slightly better in that you were looked after, but to think of those other girls- wow. But you are right, I always wonder about those shows where thy interview the most "interviewable" for their story. The Sunday Edition certainly does cover some interesting issues.

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  4. So interesting. A teammate of mine in college donated her eggs when our season ended senior year. She had no serious side effects and was financially compensated. I'm not in touch with her now but as I was going through IVF I would wonder sometimes how she feels today about that donation back when she was 22. I really don't have any first hand experience with it here in the US but I do know that their are all kinds of contractual requirements to provide care for the donors, but I don't know if that's required by legislation or rather it's more a contractual protection put in place by the clinics.

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