So, I’m in a ranty mood. It’s totally not cool to blame a dead man (and a dead genius, at that), but I blame the death of Dr. Robert G. Edwards. Edwards, a British physiologist, pioneered the process of in-vitro fertilization (IVF) against strong odds. Along with colleague and OB/GYN Dr. Patrick Steptoe, Edwards gave the world the first IVF miracle, Louise Brown, born in Oldham General Hospital on July 25, 1978, to proud parents Leslie and John. So, how did I get from a dead medical pioneer and Noble Prize winner, to fist pumping, keyboard thumping, teeth crunching anger? One word: ignorance. It started with the ignorance of the media now tasked with covering his death, and spread from there to lay commenters on the Interwebs, the you-should-know-better posters on infertility message boards, the American medical and insurance systems, a friend’s current beta hell, and an overall very angry uterus.
Mel over at Stirrup Queens has covered this all much more rationally than I’m capable of right now, so I’ll simply provide you with exhibits A, B, and C in her play-by-play of the past two days’ events. The most I could muster through my own ire this morning was a link to exhibit C on my personal Facebook profile accompanied by the following comment:
Why we are still using the term “test tube baby” 35 years and 5 million babies later absolutely baffles me. Imagine if we never moved beyond the hurtful terms “cripple,” “retard,” or “mongol.” And, FFS, if you’re going to be derogatory at least get the right piece of lab equipment. During IVF eggs are fertilized in a petri dish, not a test tube… Fertilization either occurs by placing sperm and egg together in said dish and hoping for the best, or by a process known as ICSI during which an embryologist injects one sperm directly into an egg in the hopes of fertilization.
Long story short, I find a lot wrong with the coverage out there right now, and it centers around three main gripes. First, the term “test tube baby.” Aside from being grossly inaccurate, it embodies a willful ignorance on the part of so many that is exceedingly hard to swallow. I ran a little experiment this morning. I went to Google news, typed in “Robert G. Edwards” and perused the results. 6 hits appeared “above the fold” on my computer monitor, and they included:
- “Changing the Rules of Conception with the First ‘Test Tube Baby'” (New York Times)
- “Robert G. Edwards, ‘test-tube’ baby pioneer, dies at 87” (Washington Post)
- “Nobel prize-winning IVF pioneer Professor Sir Robert Edwards has died” (Huffington Post UK)
- “Robert Edwards: Nobel Prize-winning test-tube baby pioneer dies at 87” (GlobalPost)
- “Robert G. Edwards: Der ‘Vater der Retortenbabys’ ist tot” (Die Welt)
- “Nobel Prize-Winning Fertility Pioneer Robert Edwards Dies” (Bloomberg)
(Oh, and in case you aren’t up on your German, my Langenscheidt German to English dictionary did confirm that “Retortenbabys” = “test-tube babies.”)
So, let’s review. Of the six highest ranked, most SEO-ed news articles out there on this IVF pioneer, only 2 – HuffPost UK and Bloomberg – respected the intelligence of their audience enough to avoid the “test tube” trap in their headlines. 35 years and 5 million children and editors across the globe still don’t think we’re educated enough to comprehend the term IVF. No, we’ve got to continue to perpetuate idiotic, inaccurate colloquialisms. Articles on the battle against HIV/AIDs discuss anti-retroviral treatments, pieces on cancer make note of melanomas, drug resistancies, or “tumors classified as ER+, or estrogen-receptor positive,” and endless contributions on the American obesity epidemic outline the comorbidities that accompany being overweight. Medical terminology is employed in discussing these diseases; readers are treated as willing minds wanting to learn. But, for the CDC-recognized disease of infertility? A 35-year misinformation campaign.
Second, and this extends beyond the media’s coverage of Edwards’ death, is the media’s ever-present tendency to want to take discussions of fertility treatment to the extreme. The first line of the New York Times obit reads, “Robert G. Edwards, who opened a new era in medicine when he joined a colleague in developing in vitro fertilization, enabling millions of infertile couples to bring children into the world and women to have babies even in menopause, died on Wednesday at his home near Cambridge, England.” Really? What does that add, exactly? Of the hundreds of women I’ve met in the infertility community, I’ve not yet met one griping about how she needs IVF because she waited past menopause. This global obsession with the idea that infertility is only the plight of those rich, white women who wake up one morning and at 50 years old exclaim, “Oh Shit! I forgot to have kids!” pisses me off more than I can begin to explain. I was first told I was infertile when I was 19, I requested testing for PCOS at 25, I started trying to conceive at 26, and I sought treatment with a reproductive endocrinologist at 27. A few months shy of 30, I still don’t have children. The average age of my infertility support group is early- to mid-thirties, the women with downward cast eyes I’ve sat with in two different RE waiting rooms appeared to be predominantly in their late-20s to mid-30s, yet, did you know fertility treatments let you pop a kid even after menopause. So, you’re telling me, all I need to do is go through menopause and then IVF will be a sure thing? Score!
The same Times article declared further down page that, “The technique [IVF] has resulted in the births of five million babies, many in multiple births, according to the International Committee Monitoring Assisted Reproductive Technologies, an independent nonprofit group.” You are woefully misinformed if you think IVF always succeeds and that, furthermore, IVF guarantees multiples. Of the 7 women I know who have had IVF success (defined as either currently pregnant or now raising an IVF miracle), do you know how many had more than one child? 0. But, the twins! But, the high order multiples! But, the fears of having to selectively reduce! You know when that is much, much more likely to happen? When patients are forced to use non-IVF fertility treatment methods to try and conceive. The two sets of infertility treatment twins I have first hand knowledge of were the results of timed intercourse and intrauterine insemination (IUI). Simple fact of the matter is that IVF allows doctors and patients the greatest control to try and limit the likelihood of a risky multiples pregnancy. If you (or my insurance company for that matter) gave it a moment’s thought the advantages of IVF would be quite apparent. In IVF embryos are fertilized outside the womb and then transferred back into the uterus in the hopes they will implant and thrive. With fertilization happening outside the womb, doctors and patients are able to jointly decide just how many embryos go back. My old clinic was a strong proponent (as are many across the nation) of what is known as eSET or elective single embryo transfer. Put simply, one goes back in the hopes of one happy, healthy baby. All other artificial reproductive techniques do not allow for choice when it comes to how many embryos to put back, because fertilization is left to occur in the womb. In methods such as IUI and timed intercourse drugs are used in the hopes of triggering the woman to ovulate mature eggs, which are then (hopefully) fertilized by sperm introduced into the uterus through insemination or the old fashioned way. In other words, fingers crossed!
But many women (myself included) are forced by finances, insurance requirements, or other non-health related reasons to use methods like IUI and timed intercourse, even when IVF is a better fit for their medical condition(s). (In my instance, my PCOS makes me a likely candidate for over-response to stimulation medications.) For my next cycle we will be using injectable stimulation medications to cause me to ovulate (something my body is incapable of doing on its own). This comes with the strong likelihood that I will not only ovulate, but possibly ovulate more than one mature egg. So, when Mr. But IF and I get down to business and try to make the future generation of What IFs we stand a real chance of providing his boys with one too many eggy targets. So, here we sit, at least two months before any of this is even slated to occur, fretting over how many follicles is too many follicles and at what point we will pull the plug on the cycle. We face the very real possibility that after weeks of multiple daily injections, hundreds of dollars spent on medications, monitoring, and trips back and forth from the doctor, and years of waiting and worry just to get to this point, that no sperm will ever come anywhere near my overly-abundant eggs. Infertility – where too much success is a sure fire way to fail.
So, why don’t we do IVF? A million different ways of saying it’s expensive. Really fucking expensive. And, now that we are blessed enough to live in one of the 15 states in this nation that actually recognize infertility as a medical condition, we do have some less appealing, but much more affordable options open to us (and you better believe our move to a mandate state was most certainly not an accident. I’d give anything to live in my home state, but as long as they continue to not only passively ignore infertility, but be outwardly hostile to the infertile, there’s no chance I’ll ever move back). My state’s infertility insurance mandate requires that all procedures and prescriptions associated with infertility be covered as would any other medical conditions. However, 35 years and 5 million babies since Louise Brown, my state still considers IVF an “experimental” procedure not worthy of medical coverage. They will, however, pay outright for any visits with a maternal fetal medicine doctor, early hospitalizations, or NICU stays that may result from a multiple pregnancy I could potentially achieve through superovulation with IUI or timed intercourse. Yes, the octomom’s of the world exist, and yes, multiple pregnancies do often result from IVF, but the type of outright malpractice, bad decision making, and simple luck that leads to these cases happens in almost all medical fields. Finally, with so few receiving insurance coverage for IVF, is it any wonder they are willing to push the odds and put back more than one embryo when one’s life savings hangs in the balance? I speak high and mighty now about the wonder of eSET, but have no doubt that when the clinic rips $30,000 from my cold, spendthrift, Scottish hands I’ll be begging them to “put ’em all in, Coach!” because I better get a kid out of this! But, no, go right ahead New York Times, remind me again that IVF was only invented for elderly women wanting a gaggle of mini-mes.
And, finally, when did it become SOP to spend the bulk of an obituary giving lip-service to the deceaseds’ many detractors? I must have missed the multiple Lincoln obits that went something like:
Abraham Lincoln, who lead this nation into its bloodiest of wars, robbed countless Southern gentlemen of their God-given chattel, and wore silly hats, died today at the Peterson’s House after an unfortunate incident during a performance of Our American Cousin at Ford’s Theater. The 16th President of these United States, Lincoln’s actions and beliefs were not always embraced by his constituents. Former US Senator from Mississippi Jefferson Davis said of Lincoln, “Though we were both born Kentuckians, I’ve been very unsure about what Abe’s been doing. I wasn’t sure it was appropriate, and didn’t want to get too involved in it.”
So, this is what initiated today’s angry ute. This targeted anger builds upon years of reading through one too many comments sections for pieces like Dear Prudie’s “Baby’s on Us” for Slate, Wesley J. Smith’s “Assembly Line IVF” for The National Review, or Father Tadeusz Pacholczyk’s “A Question Mark Hangs Over Their Heads (problems faced by IVF children)” for Catholic Exchange, and it adds up to a piss poor view of the fertile world, and a whole lot of me being called a murderer for aborting my ectopic and a selfish pig for wanting my own biological “spawn.” So, I hereby nominate @FurrowedFox’s “NEVER read the comments” Tweet of the Week.
What’s that, you say? Retreat to the safe haven of infertility message boards? Honestly, a pretty good suggestion in most circumstances except, 1. why should I self-ghettoize because I’m making you uncomfortable, 2. how will change be affected by hiding away in my IF silo, 3. there’s some ignorant bitches on those boards too, and 4. I fucking HATE baby dust. You may have noticed my multi-paragraph rant against the term “test tube babies” above? I loathe all attempts at trivializing this hard-ass shit we are all going through. If you think I hate it when Ms. Fertile Editor does it, you better believe it gets under my skin when those of us actually walking the walk (or injecting the inject) do it. I see “baby dust” as the infertile’s way of saying “just relax.” The term may also be anathema to me because I associate it with the most unhelpful of all the online message board stereotypes – the “wow, you’re fucked, good luck and baby dust” gal. You know, the 50 year old woman that already has 5 children but wants just one more for her new husband. That one that posts on every.single.thread about how easy her first five were, how much more heartbreaking her infertility is because she has 5 little voices at home asking her for a brother or sister, and who advises that you aren’t praying enough/patient enough/eating enough pineapple core/taking enough Vitex. Oh, and bonus points for the fact that she is inherently incapable in writing in complete sentences, proofreading, deselecting the caps lock, and entering paragraph breaks. But, don’t worry, her lack of computer abilities will be made up for in spades when she posts 55 positive pregnancy test pictures large enough to see from space in her thread titled “FINALY!” that begins “After 2 exceptionally difficult months, here’s what we did. Baby dust!” My hatred of the cutesy lingo has been the best hidden of my dirty little infertility secrets these past years, but there you have it folks, I absolutely hate it. Thank you, Tertia, for letting me know I am not alone (oh, and for writing one of the most gut-wrenchingly honest and bladder-bustingly hilarious tales of infertility ever).
Angry ute day, I tell you! When I got a message today from my rheumatologist titled “Appointment change” I literally typed my name/password into the online patient portal so hard in order to view said appointment change that I thought I might have broken my work keyboard. If they’ve pushed me back even further I’m going to do some very unkind things to some very nice cars in the hospital parking lot… Breathe out, however, for they just shortened it from a 60 minute to 30 minute slot. Hah, I’ll show them! I learned long ago that as long as you don’t stop talking, (I mean, seriously, don’t stop, don’t breathe, don’t blink) the doctor can’t leave the room. I’ve gotten many a 60 minutes out of a 15 minute follow up!
And this all leads up to the absolute shittiest of shit news – the discovery that a dear online IF friend just experienced a chemical pregnancy (early miscarriage) from IVF#1. My heart is utterly broken for her, and I don’t even know what to say. My warped sense of humor doesn’t always jive well with compassion.
So, with that, I suppose I’m off. Off to think up my team name for the Washington, D.C. Walk of Hope, off to try and find the right words to heal the unhealable, off to respond to the two brave souls who reached out to me today about my RESOLVE support group, and off to turn the meme below into an angry ute cross stitch pattern.
Edits: Some grammar/word choice/spelling issues corrected 4/12/13.