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The Morality of IVF, the Will to Live, and the Empathy We’re Waiting For

I recently read Megan Garber’s piece in the Atlantic about the history of IVF, how people perceived it back when Louise Brown was born vs. today.  While I was alive when Louise was born, I certainly wasn’t cognizant of the general public’s perception of IVF.  I don’t really remember the first time I heard the term, but I do recall being in late elementary school or early middle school and having someone tell me that a child I had met was a “test tube baby.”  I imagined a baby squished up in a test tube — one of those long skinny ones — with her chubby face pressed up against the glass.  I thought they grew the whole baby in there and then… transferred the somewhat full-grown baby to the woman’s belly.  Much in the same way you transfer a tiny potted plant into the garden outside once it outgrows its container.

The article explores the famous James Watson (as in the man who discovered the structure of DNA) quote about IVF: “All hell will break loose, politically and morally, all over the world.”  The public was horrified.  The science community was horrified.  The religious world was horrified.  And then in the middle of that storm, you have Lesley Brown who just wanted to be a mother after nine years of trying.  Who wanted to be a mother and experience pregnancy badly enough that she would volunteer to be the guinea pig for IVF.

I know there are complicated ethical issues with ART.  I know that we can’t just plow ahead with possibilities just because they’re possibilities.  There are consequences to our actions, and ethics always needs to be at the forefront in science.

But I can’t help but think about the emotional side of infertility; the emotions Lesley Brown must have gone through in those nine years.  How they fueled her decision to put herself not only in a risky situation, but to do it in the limelight.  To know that nothing would be private; the protocol made public, debated, discussed, condemned.  Can you imagine being Lesley Brown and reading these articles in the newspaper, knowing full well that those people writing the articles have never felt the suffocation that comes from not being able to conceive on your own?

This is coded in our biology, much like our will to live.  And we can understand the strength of the will to live, that people will go to extreme measures to live, will gain superhuman strength in the face of danger due to the hormones that are released in our bodies.  But for some reason, until people are faced with not being able to reproduce, they can’t really fathom the same intensity exists, the same type of measures will be taken, that we’ll become superhuman in our reaction — possibly due to hormonal reactions.  We applaud people for their will to live.  We condemn people for their will to procreate.

There are some people with a fairly weak will to live (just as there are people with a weaker will to reproduce — not everyone wants children — and some with a stronger will to reproduce), but for people with a strong will to live, you know what it feels like when you jump into water and fall too deep below the surface and fight your way to the top, your lungs feeling as if they’ll burst.  Your brain can’t slow down; it is racing trying to find a Plan B and a Plan C and a Plan D because you. have. to. live.  And sometimes your body goes on autopilot and guides you to safety.  Thrashing and buckling, you break the surface and gasp in air.  We can understand that, no?

Well, imagine all of that in the emotional sense and you have infertility.

Infertility feels like someone has their fingers around your neck and they’re strangling you.  And you wonder how the hell you got yourself in this situation and how the hell you’re going to get yourself out.

So while I know the rest of the world looked at the morality of IVF back when Lesley Brown volunteered herself for that first, fateful transfer, and I understand the importance of ethical guidelines which are there to protect every member of society, I also looked at the Atlantic article through the lens of a woman who was willing to do whatever it took to be a parent.  Which is why this quote moved me to tears:

While on bed rest, in a public hospital, during her pregnancy, Brown had to be moved from her room in response to a bomb threat (later proved a hoax). Later, she, John, and Louise had to move to a new home — one with a private backyard — so that she could take Louise outside without encountering camped-out reporters. As Louise, now 34 and a mother to her own son, put it: “Mum was a very quiet and private person who ended up in the world spotlight because she wanted a family so much.”

Because so many of us could have been Lesley Brown if we had been born years earlier.  So many of us would have been the millions of women who simply couldn’t conceive and needed to live with that fact.  And yes, while IVF has become normalized in a way, infertility is still something whispered rather than spoken about in matter-of-fact tones.  Hurtful assumptions still exist — peruse the comment section of any New York Times article on infertility to see that.  I don’t know how far we’ve come since I wasn’t cognizant of IVF when I was a preschooler, but I couldn’t disagree more with the hopeful ending of the article of how accepted IVF is now in 2012:

In the broader culture, though, IVF has won the best thing that a controversial technology can: widespread acceptance. Just a year after Lesley Brown gave birth to her first daughter, cultural normalization seemed a foregone conclusion.

THAT is what I’m still waiting for.  Widespread acceptance.  Cultural normalization.  Empathy.  Understanding.  Open-mindedness.

31 comments

1 aprilvak { 07.03.12 at 11:15 am }

I thought the same thing as a child, that they grew a real baby in a real test tube.

2 Jay { 07.03.12 at 11:24 am }

It seems as though most sections of society have accepted it- through ignorance if nothing else. I know so many people who are still utterly clueless about the mechanics of it, and just think that if you are having problems having babies, you will go try something called ‘IVF’. Sigh. Empathy though, that is something else, yes.

And James Watson is a prize ass, in addition to IVF, he has said horrible things about so many subjects, from women to weight to race. One of his quotes (about Africa) was so outrageous he promptly was dismissed as the Director at the Cold Spring Harbor Laboratory and the scientific community appears to have washed their hands off him. Good riddance.

3 Sharon { 07.03.12 at 12:09 pm }

I remember hearing the term “test tube baby” on the news as a child and wondering what the heck that meant. (I wasn’t as imaginative as you, I guess, LOL.)

While I agree with you that IVF has not necessarily gained widespread acceptance, at least not in all segments of our society, it is certainly quite commonplace these days. I’d venture to say that nearly everyone knows someone who used IVF to conceive, whether they are aware of that fact about their friend or loved one’s family building or not. (I know I was stunned to find how many people around me had experienced infertility when I started talking openly to friends and acquaintances about our difficulty conceiving.)

4 Trisha { 07.03.12 at 12:58 pm }

Although I have yet had to use IVF to conceive I am so grateful for Lesley and her bravery. Her desire to be a mother has benefited so many other woman and I know it was probably not an easy burden to carry. She has helped ease the pain of infertility a tiny bit know that there are options out there and that sometimes dreams do come true. Thank you for this beautiful post!

5 Heather { 07.03.12 at 12:59 pm }

I’m very open about our boys being IVF twins and our daughter being from OI/IUI. Sometimes I get silence and a total drop of the conversation, which to me means they are horrified I spoke of such a thing, or I get a conversation and more questions. I feel I have to speak out about infertility and infertility treatments. I may have three children, but I’ve never gotten pregnant on my own, even to have a miscarriage. My three miscarriages were all from IF treatments. I still call myself infertile. I may be done having children, but infertility is part of who I am forever.

6 serenity { 07.03.12 at 1:36 pm }

I had the SAME image in my head of test tube babies when I was young, too. Even now I have a hard time thinking of IVF = test tube babies. Old images die hard, I suppose. :)

I love the image of infertility being the emotional equivalent of drowning, and the need to reproduce being like our will to live.

I wonder often, especially lately, if the inherent judgment in people’s desire to reproduce is evolutionary peer pressure. Like we *should* be beyond these base and instinctive needs to procreate. It’s the only way I can explain all the things we do to numb ourselves – commuting for hours to sit in a cubicle in front of a computer and eat all sorts of processed, sugar-laden foods. And make connections through the internet, texting our friends, instead of calling them or forging new connections.

Like we’ve decided, somehow, that evolution means we don’t really NEED our bodies anymore. It’s all about our minds.

Obviously this is a massive generalization, but it makes me wonder sometimes.

xoxo

7 loribeth { 07.03.12 at 1:46 pm }

I haven’t read the Atlantic article yet (thanks for flagging it, Mel), but I was 17 when Louise Brown was born, so I remember it well — not so much the outrage, although I do remember a bit of that (I think the notorious Baby M surrogacy case made a much bigger impact on me in that respect) — but the “wow” factor — that science had done this incredible thing, and produced this completely normal, healthy baby (who, in the 30+ years since then, has gone on to have a baby of her own). Of course, I never dreamed then that I might have reason to use this science someday myself. And while I knew IVF was still controversial in some quarters, it wasn’t until just very recently that I realized just how far some people would like to go in regulating it or banning it outright. It seems like we are damned if we don’t have kids (“selfish”), but also damned if we try to do something about it that goes too far beyond some people’s comfort levels. :(

But it is poignant to think about how much Lesley Brown must have endured — the hormone dosages & techniques certainly weren’t as well honed as they were today. Even if we have never done IVF ourselves, we all owe her a great deal. Life as I Know It had a post that was highlighted in last Friday’s Roundup Second Helpings about Lesley Brown & how she paved the way for the rest of us — if you missed it the first time around, here’s the link:
http://www.stacieslife.com/2012/06/thank-you-leslie-brown.html

8 a { 07.03.12 at 2:18 pm }

I think acceptance is wider-spread than you realize…in the sense of “I don’t care what people do to have a baby, but I’m happy that’s not me.” Understanding is lacking, but acceptance is more prevalent than churches and pro-life groups would have you believe.

9 Nicole { 07.03.12 at 3:14 pm }

Watson got the award that he should have shared with a woman had she not died of ovarian cancer. He gets the credit though. Her name was Rosalind Franklin and she was an xray crystallographer in the 50s!

I wonder sometimes if empathy is dying out. I wonder if computers help empathy (support groups) or hurt it (moronic comments on articles about infertility from obviously fertile people).

10 jjiraffe { 07.03.12 at 4:07 pm }

Like Loribeth, the Baby M surrogacy case deeply distressed and disturbed me. That’s the first time I was aware of infertility. And the first time I wondered if I would be infertile.

Great job describing the feeling of infertility. That’s definitely how I felt when I was going through it.

IVF does not have widespread acceptance. I don’t know where The Atlantic came up with that, but I wish that statement was true.

11 Denver Laura { 07.03.12 at 4:53 pm }

I can’t remember where, but I saw something like 40 (or 80) other women had unsuccessful IVF by the same doctor at the same clinic before it worked on Brown. I can’t help but think of them this week and what they’re thinking of by rehashing the news…

12 Stupid Stork { 07.03.12 at 6:27 pm }

Love the drowning metaphor.. Perfect.

13 vablondie { 07.03.12 at 6:41 pm }

I think I had a similar image of test tube babies when I was little. I have a much better understanding now, obviously.

I am open about the fact that our son is an IVF baby. People do seem accepting of the fact that I did IVF, but they lack understanding of how it all works. They also lack an understanding of how it changes your perspective on family building. So many people think it is a guarantee of a child, and it is not. Even getting that fact through to people can be difficult.

14 Mali { 07.03.12 at 8:38 pm }

I’m Loribeth’s age (almost!) and I remember being amazed at the idea of a test tube baby; amazed, excited and thrilled at what else science might achieve in my lifetime. (Never once thinking I might need IVF myself). I’ve not come across any disapproval regarding IVF either personally, or here in NZ, unless it comes to the funding issue. Though I note my father-in-law’s will refers to grandchildren of “natural issue” and wonder if IVF would have qualified. (Those words have infuriated me for years).

You said “We applaud people for their will to live. We condemn people for their will to procreate.” And I think that is a brilliant summing up of all those naysayer commenters out there. I’m going to remember this. And use it.

I also have to second Denver Laura’s comment about the couples/women who tried IVF before Lesley Brown conceived. I’d never thought of those women before, and how every reminder must give them a twinge of regret, that they weren’t the ones who conceived, that they hadn’t been born/ttced just a few years later. I hope that they are living full and happy lives as they deserve.

15 talesofacautiousoptimist { 07.03.12 at 9:05 pm }

Thank you for brining this article to my attention. It bothers me that writers have the freedom to make sweeping generalizations about something they have no understanding of…I have yet to experience the widespread acceptance the author speaks of.

I do love your metaphor about drowning…it is so clearly understood!

Cheers to Lesley Brown for being a pioneer in infertility treatment and to all the infertiles out there!

16 Lavender Luz { 07.03.12 at 9:32 pm }

I am going to use this in the next argument I have on the subject: “We applaud people for their will to live. We condemn people for their will to procreate.”

17 Baby Smiling In Back Seat { 07.03.12 at 11:25 pm }

I’ve heard Louise Brown’s name a hundred times over the years, but never once have I heard her mother Lesley’s name, let alone heard some one take her point of view. Until now.

And I certainly have never considered the women that Denver Laura brought up, the women who wanted to be the 1st IVF success but instead became a nameless guinea pig. Or maybe they became the 2nd and 3rd and 4th etc. IVF successes. I hope so.

18 Kathy { 07.04.12 at 1:02 am }

Thank you for sharing your thoughts on this. Well said. I am exhausted after a long day and trying to wind down. I checked to see if you had posted anything today and really appreciate your perspective.

19 Alicia { 07.04.12 at 1:13 am }

You are helping us all she’d let on the realities and normal ess of infertility. Really. You are our compass when we’re not quite sure if all of what we’re thinking and feeling and writing is truly normal. Thank you for the role you play in bringing infertility to mainstream culture.

20 Alicia { 07.04.12 at 1:15 am }

Should have read like this: You are helping us all shed light on the realities and normalness of infertility. Really. You are our compass when we’re not quite sure if all of what we’re thinking and feeling and writing is truly normal. Thank you for the role you play in bringing infertility to mainstream culture.

Oh auto correct… :/

21 Anna { 07.04.12 at 5:56 am }

I know that desperation, I was fighting, I appreciate your similie. I would have done anything too. I hadn’t put my experiences into this context before, thank you.

I don’t see understanding of IVF around me. As I arrived in work this morning there was a discussion that I caught part of on BBCRadio4 criticising women who think they can ‘put off’ having children because they can just buy IVF later. My students also included similar rhetoric in a presentation they made a couple of months back, ridiculing women for using IVF because they’re too busy enjoying their lives to have children when it’s ‘the right time’. I am appalled and disappointed every time. I’m still not sure what to do about it yet, maybe I need to try and force some consideration of infertility into the curriculum.

22 Bea { 07.04.12 at 7:41 am }

Apparently Lesley brown was not aware that she was the guinea pig. She has been quoted as saying she assumed ivf was an accepted and successful treatment and that hundreds, if not thousands of babies had already been born that way. No one exactly lied to her, they just didn’t really tell her how new it all was. Now you can have a real medical ethics conversation right there.

However, she still had to go through a rigorous time – laproscopic retrieval of a single egg during a natural cycle! – and for her willingness I am most grateful. Those nine years of trying must have been awful, with the limited knowledge and options available.

23 JourneyGirl { 07.04.12 at 7:53 am }

Love this, I can certainly can appreciate Lesley and can relate to her easily. The scorn and fear that I hear (‘I could NEVER do that’) when I tell people that my son was conceived via donor egg in Thailand tells me that acceptance is thin on the ground.

24 Her Royal Fabulousness { 07.04.12 at 9:19 am }

I just had an amazing conversation with my father of all people about her legacy with IVF and how it has affected me. Just like many other pioneers (with political movements, art, professions) some brave person had to be the first. I am forever indebted to her, even if acceptance and understanding is as slow moving as mud.

25 lisa { 07.04.12 at 9:51 am }

I too imagined a baby growing inside a test tube. I never imagined that I would live IVF myself. Who the heck thinks that, right? It’s supposed to be marriage, sex, baby, right? That easy. Ha!
Anyhow, widespread acceptance, please. To me that means everyone accepts it, is not embarrassed by it, talks about it, provides insurance coverage for it. Until we’re at that point I feel like IVF is still in the proverbial closet.
Thank God for people like the Brown’s – who knows, without them, my children may not be here today.

26 Iris Waichler { 07.04.12 at 10:08 am }

I recently read that 5 million babies have been born as a result of assisted reproductive technology since Louis Brown came into our lives. My daughter among them. I remember the day Louise was born and all the media coverage. I also had images in my head of a freakish young child and imagined as she grew all the developmental and medical problems that would arise because of the way she was conceived. I never imagined I would have a child some day thanks to the miracle of assisted reproductive treatment. The power of words and the way media presents things still shapes our thinking. I almost drowned once and your metaphor was perfect. Thank you for remembering and honoring Lesley Brown. Her courage changed the world and certainly my life. Thanks for all the work you do Mel to help others understand the implications of infertility. There certainly is more work to be done to educate people about infertility treatment and the impact it has on the lives of millions.

27 Deathstar { 07.04.12 at 11:12 am }

Now people think IVF is a fait accompli to having a baby. Or some sort of shortcut to waiting and relaxing. Like driving a Ferrari up the coast as oppose to taking a bus.

28 Lisa { 07.04.12 at 10:07 pm }

This was such a beautiful post. Thank you for describing the emotions so beautifully.

There really isn’t a widespread acceptance of IVF nor is there any sort of understanding. We all know that. I wish the rest of the world would get off of their high horses and get some dang empathy.

I’m ashamed to say that I didn’t know that Louise’s mother’s name was Lesley. She was truly a hero.

29 mrs green grass { 07.05.12 at 5:24 pm }

This is a great post Mel – and timely for me personally. I’m pregnant with triplets after transferring 2 embryos (originally I had quads) and am pursuing selective reduction. IVF itself is still not 100% accepted and now I’m in a further category of something even more controversial. Part of it is the nature of IVF itself. Should I have been advised to transfer 2 embryos?

Because the REs are focused on getting people pregnant, there is very little support out there for what happens after you actually get pregnant and many of the complications that may arise.

30 Cristy { 07.05.12 at 8:53 pm }

PBS ran a segment on the American Experience awhile ago called “Test Tube Babies.” The Timeline for IVF that they posted was very interesting, especially the story about the Del-Zio lawsuit. http://www.pbs.org/wgbh/americanexperience/features/timeline/babies/

Lesley Brown wasn’t some crazy woman who wanted something unnatural. Doris Del-Zio’s story illustrates that naturally. What she was was a woman who wanted a child and had the courage to try a new technique to achieve her dreams of motherhood. You’re absolutely right: she’s a hero, not a villain.

The way you describe that want left me in tears. Too often, I’ve found it hard to explain to others not living with IF/loss what it’s like to live with this. Too often, I fail at helping them understand. This description puts into words everything I feel. Thank you for this.

31 loribeth { 07.06.12 at 9:31 am }

@Cristy: I had never heard of the Del Zios. What a heartbreaking story. Thanks for bringing that to our attention.

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