september 2013 monthly theme – why we blog

When I started my blog, it was a place to post pictures and hilarious anecdotes about my kid because I had quit Facebook.  I had been secretly reading IF blogs when I was pregnant with him, hoping to find someone mirroring the difficult emotions I was feeling not only being pregnant after experiencing infertility and miscarriages, but also how to cope when you are pregnant and your infertile friend is not. I found a few people that today I call my friends. These people saved my life.

And then… then I starting to write about my journey on my very public, very NOT anonymous blog. I needed to get some of that agonizing weight off my chest. I needed the people in my life to see it. I needed to be recognized. I needed to come out of the shadows. When the PAIL blogroll was first started, I added the button so quickly you would think my life had depended on it. Which honestly, at the time, it did. Even through all of the difficulty in getting this niche space together, I felt very strongly that this space had VALUE. I still do. I always will.

Each of us here at PAIL has a different interpretation of our mission statement. Mine has always been “Just keep talking.” Just keep talking. Or don’t. Or just listen. Or close up shop and move on in a different way. Every path to resolution is valid, as is every path we take with our blogs. You need to do what you need to do to process, to move forward, to heal from this. When I say “just keep talking” I suppose what I mean is that I think it is a disservice to the community as a whole to not talk about what it feels like, IS like, when the baby comes home.  We need to be able to find people further down the path to follow, to lead us through the tough spots, to hold our hands, to cheer us on, to understand.

I am not one to blog about blogging. To be honest, I usually skip posts about it. Ah, but then I entered Blog Identity Crisis #187346 and started to really, genuinely think about my space and what I want to do with it now that I am (99%) sure that family building is behind me. It’s a tricky place to be in, when you feel resolved in your heart, but you aren’t sure how to let go. But I’ll write more about that on my own blog in my submission for this month’s theme.

Suggested Writing Prompts

  • Did you start blogging before, during, or after your journey though infertility/loss/adoption? 
  • Why did you start blogging? What has kept you blogging?
  • When you became a parent did you transition your blog or start a new space? What were your reasons for doing so? How do you feel about your decision now?
  • Have you ever felt pressure to blog about certain things and not others? What influences your writing, if anything?
  • What did you hope to achieve by blogging? Do you feel that you have done this?
  • Why is blogging important to you NOW?
  • What value do you see in blogging the “after”? 

As always, these questions are just a guide. Please feel free to write anything and everything you would like to on this topic in whichever way suits you best. If you have previously written on this topic, feel free to link away in your post, or submit any previous post on the topic as you see fit. And of course, if you do not have a blog of your own, we are happy to hear your thoughts in the comments and will link to your comment in the full post list for all to read.

Entries for this month’s theme are due Thursday, September 26th at midnight, EST. The full list of links will go live on Friday, September 27th.

Please submit your posts using this form:

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news item: “Prenatal Testing: It’s Just Information, Not Answers — or a Guarantee”

Prenatal testing. Did you do it?

This week we came across a really interesting article about prenatal testing and the decisions parents make in response to the results they get. It’s written by a woman (Claire McCarthy) who is not only a pediatrician but also a Mom who had a severely disabled child who died at one year of age (they did do genetic testing on him). With that sort of background, I was extremely interested to find out why she chose against doing any genetic testing with her final pregnancy. Click over to her article to read a more thorough explanation of her reasons, but here is the synopsis:

First of all, you can’t test for every single genetic problem…

Second, there are some really wonderful people out there with less-than-perfect genes…

Third — and this is the part that gets left out of the conversation almost entirely — being genetically normal is no guarantee of anything.

She goes on to say:

I don’t mean to sound judgmental of people who choose to end pregnancies when genetic problems are found. These are intensely personal and individual decisions, and decisions that are deeply dependent on circumstances.

When I was pregnant with our first child, we decided against doing any genetic testing, because we were of the mindset that we wouldn’t terminate a pregnancy either way, and with the high rate of false positives, I figured there was no reason to put that chance of extra stress into my life. We plan to do the same (not testing) this time around. However, I have plenty of friends who have chosen the opposite – as the author of this article said, it’s an intensely personal decision.

The focus of Claire’s concern about genetic testing is that she feels not all parents can make calm decisions with clear heads and clear hearts when faced with a potentially devastating diagnosis.

I’d also lived enough of life to understand that control is an illusion. Life, as they say, is what happens while you are busy making plans.

Understanding this, I think, is crucial to being happy parents — and happy people. But I don’t think that most obstetricians are talking about things this way. I don’t think they are putting testing into context for expectant parents, helping them really understand the meaning and limitations of test results.

The pace of genetic research is stunning and exciting. But there is more to life and health than genetics — and when it comes to making decisions about pregnancies, we need to help people understand that.

So what do you think?

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Did you choose to do genetic testing while pregnant? Why or why not?

Do you regret your decision?

What do you think of the author’s argument against testing?

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pail_josJosey is a semi-crunchy mom of a toddler who spent her college years studying business and French and traveling whenever possible. She now works at the local medical center and is continually in search of the optimum work/life/party balance as she cruises through her 30s with her family and friends in Colorado. She is more than a little Type-A and researches the hell out of random things that pique her interest. Josey blogs about her family’s travel and outdoor life adventures at My Cheap Version of Therapy.

mothering, a tribute to the cause – (elizabeth)

This time of the year is all about honoring mothers. Over the next two weeks, we have International Bereaved Mothers Day (May 5), Birth Mother’s Day (May 11), Mother’s Day (May 12), and Step Mother’s Day (May 19). In recognition of this, we will be featuring a different post every day this week from a PAIL reader who has volunteered to share her thoughts about mothering. We hope you enjoy reading everyone’s posts this week! 

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Mothering as a Dragon Mom

When PAIL called for submissions on mothering a few weeks ago in honor of Mother’s Day, I signed up, not really knowing what I’d write about, but figuring I’d come up with something by the deadline. Now, here I sit the night before my post is due, and my thoughts are jumbled, my emotions are all over the place, and I’m tired. Really, really tired.

For those of you who aren’t regular readers of my blog, I am a mom of two beautiful children, Grayson (2 1/2) and Charlotte (3 months). While Charlotte is typically developing and healthy, Grayson suffers from Leighs Disease, a rare and fatal form of Mitochondrial Disease.

Grayson got very sick very quickly last week and we spent the majority of the week in the hospital. I am running on fumes today, desperately needing a day of rest and to take care of myself. But Grayson’s needs are constant, and he never gets a break from the disease and symptoms that are ravishing his body and stealing his future.

It’s taken months, but I’m finally realizing and admitting to myself that I am a Dragon Mom.

I read Emily Rapp’s NYT article months before Grayson’s diagnosis. If you haven’t read it, it’s beautiful and heart wrenching. And now that I’m living it, I can say that every word is true.

Rapp writes, How do you parent without a net, without a future, knowing that you will lose your child, bit by torturous bit?

I mother Grayson in the present. I never think about or look forward to him going to kindergarten, playing t-ball, or learning to drive. Because he won’t ever do those things. There are no goals for him and no expectations except to keep him happy and comfortable. There isn’t even any expectation of progress, because we are at a point where Grayson’s skills are going backward instead of forward.

The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss.

Before I had Grayson, my mothering goals were definitely performance driven. My kids were going to be well dressed, polite, social, smart, etc, etc. Grayson has taught me that while these things are wonderful (and yes, I still want all of them for Charlotte), they are nowhere near as important as ensuring a child feels loved, protected and worth fighting and sacrificing for. When I hold Grayson’s stiff body in my arms and make contact with his eyes that involuntarily shift back and forth, I’d like to think that he knows I’m just a little different than anyone else in his life; that I love him more fiercely than anyone else, because I’m his Mom.

I am a reflection of him and not the other way around, and this is, I believe, as it should be. This is a love story, and like all great love stories, it is a story of loss. Parenting, I’ve come to understand, is about loving my child today.

Motherhood has changed me. My mothering story so far is one of incredible highs and devastating lows. I’ve been forced to begin to prepare for the day where my firstborn won’t physically be with me on earth, although I don’t really think anyone can truly be prepared for such loss. But until then, I will love Grayson for who he is today. Because today, he’s here and he’s adorable, sweet, funny and because of him, I will celebrate my third Mother’s Day this week.

Elizabeth of Snips, Snails, and Puppy Dog Tales is a SAHM of two. A former teacher, she now spends her days figuring out how to best parent a healthy child along with a child with profound special needs.  She loves God, her amazing family and friends, and good Mexican food.

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news item: I’ve Been Drinking Through My Pregnancy

Drinking during pregnancy.

I’d hazard a guess that this is a hot button topic, and though it’s part of the title of this post, it’s not the whole point of this post. We’ll get back to that.

Last week one of the PAIL contributors sent us an email about the article, “I’ve Been Drinking Through My Pregnancy.” My knee jerk reaction before reading it (full disclaimer – I was someone who had a few drinks while pregnant with the full blessing of my medical provider) was along the lines of…oh great… another article where people are going to bash the author for making any number of responsible, informed choices with her own body while she was pregnant . Honestly? I was pleasantly surprised.

The author writes:

When I called my doctor to ask her what I could do to get some sleep, she said, “If you want, drink some wine. No more than one glass every other day. You’re not going to hurt anyone.”

I had spent the majority of nine months worrying about my water intake, my caffeine intake, my calcium, my folic acid, my weight, lunch meat, cheese, mercury in my fish, my cankles, that I was exhausted. When my doctor suggested drinking wine, I felt a huge weight lift from my shoulders. It was precisely the permission I needed to make my own decisions about what was happening to my body.

Okay. So a show of hands here – how many women here have felt stressed about how to best  take care of their bodies and unborn child(ren) while pregnant?

NOW, a show of hands – how many women here have been lectured by friends, family members, and even strangers about how to best take care of their bodies and unborn children while pregnant?

In my personal opinion, when you travel the ALI road to pregnancy and parenting, you tend to research the crap out of … well, most anything and everything. For some women, it means that they end up afraid of doing, eating, or saying anything that would be perceived as being ungrateful for the pregnancy (read: the posts where women claim to not miss A SINGLE FACET of non-pregnant life – do you women really exist?). For others, it simply means they had time to research too much and drive themselves a bit batty. For many, the years of research and pages of questions we have peppered our medical providers with have allowed us to make informed choices that we feel good about…even if we’re afraid to admit it to everyone.

Recently, I admitted to a group of close friends that I occasionally had a glass of wine while pregnant and one of the women broke into tears. She told me later that it was so hard for her to get pregnant that she would never “play fast and loose” with her child’s well-being and confessed to being amazed that I am so “cavalier” with my precious babies. I understood her fears. But, I also knew that my miscarriage came during a time when I hadn’t had a sip of alcohol in two months and I was eating a low-fat, all organic diet. I was the healthiest I had ever been in my adult life and the worst still happened.  Also, this woman lets her son play football, which seems far riskier. I said none of these things. I just nodded, thanked her and walked away.

Ugh. It’s hard to get mad at someone whose judgment is coming from a place of pain. I get it. But it’s still judgment. People judge you for everything from how you become a parent to how you actually parent… the judgment seem to be never ending at times. However, I love the writer’s final point:

And no matter what motherhood path we choose, we all end up muddling through somehow. What’s more important than following rules is giving ourselves the breath, the space, and the grace to be the mother we need to be. And if we could extend that lesson to others so I don’t have to write this anonymously, that would be great too.

The main point of this post for me? The elusive “let’s respect each other’s parenting choices” card. Awesome.

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What was the biggest thing people judged for you during your pregnancy?  Eating cold deli meat, sushi, and soft cheeses? Having a drink? Sleeping on your right side instead of your left?  Highlighting your hair? — How did you handle it?

If you adopted, what kind of judgments did you face? Open adoption vs. closed? Domestic vs. international? Newborn vs. older child? Telling the child vs. keeping it a secret? Did people try to tell you the “best” choice (in their opinion, obviously)? — How did you handle it?

Do you think you have become more/less judgmental thanks to the ALI journey?

To you catch yourself giving unwanted/unasked for advice to others? Or do you bite your tongue?

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news item: “while you were puking…” (SSRI risky during pregnancy)

Today’s post ended up evolving into something of a guest post from Ms Future PharmD, with an assist from yours truly. It has been really interesting and illuminating getting to know the expertise that is out there on the blogroll this way. Every one of us has something unique to offer, from both personal and professional knowledge. So if you see something interesting in the news, on any relevant topic that interests you, please send it to us with your thoughts here. Similarly, if you have a site suggestion, don’t hesitate to drop us a line here.

In this post, we examine a recent blurb from Babble discussing the risk of SSRI during pregnancy. We recognize that within this community, the incidence of anxiety and depression related to infertility, loss, and pregnancy are likely higher than the general population of similar demographics. PAIL recommends that you always consult with your healthcare professional to choose a treatment path that is right for you, your child, and your circumstances – whatever that path is. Please take care of yourself, and understand that others are trying to do the same.  

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Last week, Ms Future PharmD emailed us about an “article” (it’s a paragraph at best – let’s call it a blurb) about SSRI (selective serotonin re-uptake inhibitor) use during pregnancy, complete with evidence trail leading back to the clinical study. To say this piqued my curiousity both personally and professionally is an understatement. I have mentioned before that I dealt with crippling anxiety during my pregnancy with HGB, but may not have confided that I subsequently went on an SSRI (an agonizing decision made while breastfeeding) to treat severe PPD afterwards. (Please feel free to email me if you would like to know more about this experience and the choices I had to make – I have not blogged about it to date). I have also mentioned that in my professional life, I use clinical drug trials to support brand messaging for pharmaceuticals (albeit for a different audience than the general public, 90% of the time). When I read the Babble blurb on SSRI use during pregnancy, I immediately saw the problem. Ms Future PharmD had this to say when she initially contacted us:

Here’s the trail of discovery: first I read it at a Babble article (yes, I should stop…) This is the article the Babble author references. Here’s the actual study (freely accessible) – via Human Reproduction It seems to have been addressed in a pile of regular newspapers as well as some TV news outlets.  Here’s one from a Boston TV news station.

I also saw it pop in my Twitter feed via Postpartum Progress here and again at Babble here (both pieces by Katherine Stone @ Postpartum Progress and both worthwhile reads in my opinion). So, what is causing all the stir? Here is the original blurb from Babble, in its entirity:

SSRI Risky During Pregnancy

According to a new study, “there is clear and concerning evidence of risk with the use of the SSRI antidepressants by pregnant women, [and] that these drugs lead to worsened pregnancy outcomes.” Additionally, there is no evidence at all of any benefits of using these antidepressants during pregnancy — not for the mother or the baby. Source; Medical Xpress
I have written here before about the actual importance and validity of  “a new study” and the perceived importance and validity of ” a new study” by the general public as reported to them in the mass media. To say that it is watered down, with the “key messages” distilled into a single soundbite i s putting it mildly, but right above this paragraph is a shining example (e.g. what are the definitions for “outcomes” and “benefits?”). Alarmism, with a dash of no actual imformation makes for a one-sided, and frankly potentially damaging blurb. To find out exactly what “the study” measured, one would have to click on the source (which is again, a study summary, and not the actual study). How many readers are likely to do this? (Which, to be clear, is not a statement on the intelligence of the average reader, but simply the amount of time available to flesh out the message that was just consumed.) As it turns out, the study is actually a meta-analysis of existing literature chosen by the researchers and examined for common themes. In other words, nothing was actually empirically measured in a clinical setting.  At this point, I begin to see red and have a hard time separating my professional distate from my personal outrage and experiences.

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Ms Future Pharm D dissected the summary AND the clinical paper for us, adding in her thoughts:
*

Preface: I’m not your doctor, or a doctor at all, so this doesn’t count as medical advice.  See your own doctor or get a referral to a specialist if you have questions about your own health.  SSRIs are a group of medications used to treat depression and anxiety that might do something to serotonin levels in your brain but we aren’t sure yet exactly how they work.  Popular ones are Proz.ac (fluoxetine) and Zo.loft (sertraline) although there are a whole bunch of diverse drugs in the class.

One of the things that makes me really mad about this article is the things it isn’t telling you.  It doesn’t really have anything new to say.  All of science says that SSRI antidepressants are helpful for some people and not for others (publication bias or not).  This isn’t new, yet this article gets all excited about it as if this is something new.  (Sidenote: publication bias means that if your study doesn’t find your drug beneficial, you don’t publish it, but it gets reported to the FDA. This article reviews all the studies, not just the published ones.  Having no access to unpublished articles, we don’t know if the only reason they weren’t published was that the findings weren’t positive.  There could be other problems too.)  All of our research says that CBT (cognitive behavioral therapy a.k.a. talk therapy) is as beneficial as or more beneficial than SSRIs alone.  That’s not new either.

The big things that are missing from the (second, summary) article are an explanation of the magnitude of effects seen, or how big a deal it is that the SSRI changes pregnancy outcomes.  There’s a higher risk of cardiac defects, yes.  The difference is 0.09% with no SSRI or 0.1% with it.  Is that fundamentally different? Probably not.  How much shorter are pregnancies when the mom takes an SSRI?  The article makes a big fuss about how gestation is shorter but never admits how much shorter (it’s less than a week shorter).  They mention an increased risk of miscarriage, but again skip mentioning how much higher.  In one of the studies they cite, the SSRI-taking women had a 13% miscarriage rate and those without had a rate of 8%.  The usually accepted miscarriage rate is 12-15% in the population, so that isn’t actually evidence that the SSRIs had a thing to do with it.

When we get to the section specifically on SSRIs and infertility, the authors conclude that we should study it more because the evidence is sparse and that sperm counts might be affected by SSRI usage.  Yes, there’s one study that showed that couples treated for depression while undergoing infertility treatment got pregnant at much higher rates, but it was published in a not-so-reputable journal (not a good sign of its credibility) and it only sampled 140 couples (hardly enough to conclude anything about every infertility patient everywhere, other than to say treating mental health is important).  All this fuss and the real conclusion is that we should study it more?  News media, read the article.

This article also spends a lot of time talking about how SSRI use is associated with negative outcomes in pregnancy (hypertension for example).  That tells us not much about whether the SSRI is being used because the pregnant person is otherwise at increased risk of hypertension (say due to anxiety or obesity or something else) or if the SSRI causes the hypertension, and since most studies are done after the pregnancy ends (retrospectively), there’s no way to really know.  Likewise, perhaps someone with a history of loss gets depressed and then an SSRI.  Does the next miscarriage really have to do with the SSRI?  It’s hard to know without a whole lot more study.

The biggest thing left out of this article is what happens in depressed women who get pregnant and aren’t treated at all for depression.  The outcomes are worse than those in women taking SSRIs and include more miscarriages and preterm births.

The thing that makes me the most upset reading this article is the focus on the fetus.  Yep, fetuses are important if you’re trying to have a baby (duh) but so are mothers.  Nowhere does the article talk about the incidence of postpartum depression or psychosis in mothers treated with SSRIs or CBT (it’s lower based on the research we have).  Nowhere does it talk about quality of life for depressed pregnant mothers who are untreated, or her support people.  Nowhere does it talk about the long-term consequences to relationships of women being untreated or possibly undertreated for depression/anxiety during pregnancy.  Untreated depression is not a pretty thing and that’s why we treat it.  Treatment of some sort is probably a really good idea if it was in place before pregnancy and stopping suddenly is not a great idea either (brains are slow to adapt to changing medications that alter their functioning so you have to taper down, and this doesn’t mean the medicine is horrible for you, it means your brain is good at adapting).

Overall I’d say that this article is sensational and doesn’t include literature that is important to the decision on how to treat a woman who’s depressed and is/may become pregnant.  The guidance from the leading medical folks is still “consider the risks and benefits carefully before treating or changing treatment.”  This article doesn’t change that at all, so if this might be you, be sure you get the treatment you need to be healthy and have a doctor you know is an expert in depression treatment during pregnancy supervising your care.  The article does make a good point that it’s important to have a qualified specialist treating pregnant women, especially those with infertility to cope with.

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Did/do you struggle with anxiety/depression related to your ALI journey? Pregnancy? Postpartum period?

Have you previously written about these experiences, and would you be willing to share them again by linking in the comments?

What is your impression of the Babble blurb? Would you have clicked the “source” link to find out more?

Have you taken (or decided not to take) an SSRI during pregnancy or while breastfeeding? What factors went into your decision?

Do you feel that there is enough accessible information about these issues made easily available to the average woman?

What questions would you ask your doctor (or have asked) if faced with this decision?

**Please be mindful of your comments in this discussion. The choice to take medication or not is extremely personal and sometimes difficult. Thank you.**

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