Tuesday, September 6, 2016

The power of awareness and education

On that summer day 31 years ago, when I stood at the front of the church filled with friends and relatives in a fluffy white gown & said my marriage vows, I knew -- intellectually, at least -- that not all days going forward would be as happy as this one. "For better, for worse, in sickness and in health," we said to each other.

But few starry-eyed couples have more than a hazy idea of exactly how bad "worse" can get, and what forms it can take. I am sure that (unless, MAYBE, they have a close friend or family member's experience to draw upon) infertility and pregnancy loss rarely (if ever) make it onto their list of "things we're afraid might go wrong."  This is partly because most happy young newlyweds have difficulty imagining that anything could go wrong, period -- but also because infertility and pregnancy loss are so rarely discussed openly in our culture that when they do happen to you, it comes as a huge shock and incredibly isolating experience. Nobody's ever mentioned it, therefore, it hasn't happened to anyone else in your circle -- right?

Would it have helped these couples if someone had sat down with them, pre-marriage &/or pre-conception and, along with the usual list of Things That Might Go Wrong That You Will Have to Deal With (job loss, money problems, health issues...), stated bluntly that some parents who want babies don't get them, and that some of those much-wanted babies die before or shortly after their parents get to take them home (along with some sobering statistics) -- and here's what you need to watch out for?

Maybe.  I was probably more aware than some women of what might go wrong during a pregnancy, because I read a lot. And I carry around a nagging voice inside my head. If something is going to go wrong for somebody, OF COURSE, it's going to happen to ME. (My teenaged experimentation with drugs, alcohol and other illegal or semi-legal mischief, was pretty minimal, because I KNEW, beyond a doubt, that if anyone was going to get caught doing anything wrong, naturally, it would be me...!) 

Even so, reading will only take you so far, particularly when most women's health books & pregnancy manuals contain very little information about what might go wrong, and what to expect when it does. I was truly perplexed when I realized I was dealing with infertility. All the magazine articles I'd ever read on the subject talked about irregular periods and sexually transmitted diseases being the main culprits, neither of which were issues for me.

Of course, when I finally did get pregnant -- and "something" actually did happen to me -- it hit me like a ton of bricks, despite all my reading. I distinctly remember wailing in the ultrasound suite, after the technician left me alone (!) to clean myself up and return to my dr's office for further instructions: "WHY IS THIS HAPPENING TO ME???" (When I got home, I pored over my pregnancy books again, grasping at straws, searching for reasons, and for any bit of information about what I could expect after this sudden twist of events, how my life was supposed to go on from this day forward. I was sadly unsatisfied on both counts.) 

I thought about this again after reading two recent blog posts about the desperate need for better awareness and education on these issues. 

Sarah at Infertility Honesty had a great post today about overhearing a group of eight young people celebrating an engagement, and their enthusiastic discussion about how many children each of them were going to have. Statistically speaking, at least one of those eight young people will experience fertility issues in the future.
"There was no acknowledgement whatsoever that babies might not come right away or at all.  No mention that many who want three kids can only have one, or maybe none, never mind what they have to go through to get there.  And the utter lack of control we humans have over human reproduction?  Nary a whisper of this truth.  Or this one: That you can’t always have what you want in the kid department, never mind the process of things not working can violently shove you through a transformation that makes the transition into parenthood look like kindergarten circle time."

Sarah resisted the impulse to head over to their table and deliver a lecture ;) but instead, poured out what she wishes she could have said in the form of a list: "Nine Things You Need To Know About Human Reproduction People Should Have Told You But Probably Didn't."  It's a great list -- go over & read it.

Of course, even if/when pregnancy occurs, a take-home baby is not guaranteed. So often, grieving parents of stillborn babies are told "Sometimes these things just happen" -- when in fact there are some simple things they can do to help improve the odds of their baby's survival, says Lindsey Wimmer, RN, in a recent post titled "The power of awareness" on her blog Stillbirth Matters. Several countries, including Norway, Netherlands, New Zealand and Scotland, have seen significant decreases in the numbers of stillbirths recently, simply by encouraging & teaching mothers to monitor their babies' movements and to come in immediately if they notice any changes or have any concerns, together with an increase in screening for fetal growth restriction.  Wimmer even provides a script for doctors to use for an honest discussion with their pregnant patients about the possibility of problems and what they can do to help -- which I absolutely love and wish would become standard practice throughout North America. Much as I adored (and still adore) my ob-gyn, I do not recall having any such conversation with him. It might not have made a difference in the outcome of my pregnancy, but it might have made a difference in how I felt about things afterward.

Knowledge is power. It does have its limits. Being aware of declining fertility isn't going to save you when your ovaries are shot at age 22. Likewise, despite the best efforts of parents & medical staff, not all babies can be saved.  And I am not sure that knowing more about infertility & pregnancy loss and how common they are is going to reduce the shock and pain you feel when it actually happens to you.

But knowing that you're not alone will go a long way toward reducing that awful feeling of isolation and stigma so many of us feel when "worse" happens.


  1. There are many things I wish I would have known when I was younger. But you know what? It's likely that if I was given those lectures, I wouldn't have taken them to heart. It's the beauty of being young that we believe we are invincible! So sadly, failure and loss are often the best teachers.

    4 yrs ago, I went to a wedding while we were in the thick of infertility and an unclear path ahead. As the the rings were passed around to be blessed by all the guests, I held them and prayed "not them" with regards to knowing the pain I knew and still know. It's something I wish for everyone who desires to become a parent.

  2. Great post, Loribeth.

    I shared your "if anyone is going to get caught, it'll be me" fears, and is one of the reasons I was desperately careful not to get pregnant. I too may have ignored that information in my 20s (early/mid at least), as I was so focused on not getting pregnant, that the other possibility just wasn't relevant to me at the time. Still, yes, I wish that my doctor (as good as she has been) had talked to me as I entered my 30s.

    You're right of course. Knowing that risks are higher doesn't necessarily make these losses easier. I certainly remember that my second ectopic was no easier to go through than my first (much harder in fact). But your last line is the one that is so true. Knowing that I wasn't alone, and being able to connect with others, helped a lot.

    1. I too shared THAT particular fear! (Ironic or what in hindsight??)

  3. So true. I remember being blissfully ignorant in my 20s and discussing with friends how many kids we would have and even what sort of age gap in between, having no idea that it is not so simple for a lot of people! I think it's also sad that people don't announce pregnancies before 12 weeks because then if you have a miscarriage it can feel less real to people around you, like it never happened. There was a comment on another blog by a women who got stage four cancer and wishes now she could have told her just married self in her 20s not to put off having kids as there just is no guarantee.

  4. Thank you for writing this. I once told someone that as much as I worried at times about all the "stuff" ahead, infertility really came out of left field as a total surprise. I mean, I had somewhat anticipated job loss(es), health issues, etc - the stuff you mention - because most people hit some very tough things at some point in their adult lives, but infertility wasn't even on my radar as one of those potential issues.

    Like you say, I don't think knowing reduces the pain when infertility or loss happen, but when I got diagnosed, I didn't know anyone who had struggled to have children (or so I thought at the time). I was very fortunate that a simple Google search made it apparent quickly that this issue was far more prevalent than I'd ever realized. That empowered me to speak up some in real life (and online) and able then to connect with people who had also gone through various aspects of infertility. That connection was crucial in so many moments.

  5. Oh, yes. I feel you on the "if it's going to happen, it will happen to me" feeling -- I used to joke in my 20s when I was married to someone else and wanted children but he wanted to wait that I had a "womb full of dustbunnies." Which isn't at all medically accurate, but somehow I made jokes about infertility before I truly knew what it was. I knew my cycles were messed up. I just didn't know what that would MEAN, in the long haul. I didn't know where I'd end up. I want more education that IVF is NOT a silver bullet. I want more honesty about the fact that you can do everything possible to make it work and...have it not work. I guess in health classes you can't tell high school students that they might not ever get pregnant or stay that way, but maybe...why not? Why not include a bit on infertility and some of the things that could impact it or signs so that you're not thinking things are wacky in your 20s and then suckerpunched with a diagnosis in your 30s? I knew people who didn't have children and wanted them growing up, but I didn't know why. And I loved Sarah's post and how those people totally live in a bubble of not-knowing. Her thoughts are amazing and I wish it was like a brochure in college health clinics. And yeah, knowing and being able to prevent tragedy are two different things, but the community in knowing it's not just you is so helpful. Thank you for this awesome post!