A set of questions pertaining to everyone who has suffered one or more losses–from chemical pregnancies and early miscarriage to ectopic and beyond to late-term loss and…here is where our language is lacking…death of a child soon after birth.

Actually, our language is lacking left and right. We use the term “failed cycle” to describe both the failure of IUI or IVF. But there is a key difference. With IUI, fertilization may or may not have taken place (obviously, implantation has not happened either, but that’s a different story). But with IVF, an embryo has already been formed. You are, in a way, pregnant during every IVF cycle. It’s just a matter of implantation. So what is the word to describe this type of loss?

What do we call that child who is born alive but dies soon after birth? We have another term–stillbirth–to describe a child who wasn’t born alive, but why don’t we have a name to honour those who are born alive and die soon after?

Are there words connected to loss that bother you–especially medical terminology (habitual aborter comes to mind just because those who haven’t suffered a loss may hear habitual aborter and think it is something entirely different).

These next two questions ask how important is it to you (on a scale from 1–10) that people use the correct terminology to describe your loss?

1. How important is it to you that they differentiate and use the term miscarriage if the loss was prior to 20 weeks or late-term loss after 20 weeks (on a scale from 1–10; and explain your answer if possible)?

2. How important is it to you that they use the name of the correct type of loss (ectopic, blighted ovum, molar, chemical, stillbirth, etc)? Again, the scale is 1–10 and it would help if you could explain your answer.

Kotapress has a fantastic online dictionary concerning loss, but depending on your religious beliefs or how you view pregnancy loss, not all people would be comfortable with terms such as angelversary. I started using terraversy (a combination of terrible and anniversary–with obvious connections to the idea of in-ground imbedded in the word) to describe those terrible days–date of death or lost due date–just because it doesn’t have religious connotations. And people process loss differently–I think it’s important to be inclusive so that however you view your personal loss, you can still have language to describe what happened and how you feel.

A huge thank you in advance to everyone who has already helped me with this chapter by providing interviews or sharing your stories of loss. Writing this chapter…just sucks. Whereas in every other chapter there is an element of hope–yes, things can go wrong, but ultimately, there is hopefully a child at the end of the path–this chapter…well…I don’t think I need to finish that sentence for you to know what this chapter is about. Thank you for being open to answering my dozens of questions–I want to get this right so that it serves the greater community and doesn’t just speak to my personal experience. And some of these losses are outside my experience–such as late-term loss. And without your stories, I wouldn’t be able to do this chapter justice.

More questions to come. This is just a week of questions, questions, questions. And feel free to email your answers directly to thetowncriers@gmail.com if you don’t wish to post them in the comments section.
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Updated at 2:20 p.m.:
Joan added this question in the comments and I thought I would move it up here:

Do you differentiate between a chemical pregnancy and a miscarriage?

She explains: There seems to be disagreement even in the medical community. A midwife in my OB practice told me a chemical pregnancy “doesn’t count” as a miscarriage. My RE said it absolutely does. Does calling it a “chemical pregnancy” make you grieve any less? In my case, I think it did, but losing the chemical pregnancy was much more painful physically than the miscarriage I had a year and a half later at 6.5 weeks. Go figure.

October 15th is Pregnancy and Infant Loss Awareness Day. The good people at Remembering Our Babies is spearheading a movement to have everyone light a candle that will burn for at least an hour at 7 p.m. (whatever your time zone) on the 15th in order to create a wave of light.
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Updated at 1 p.m.: Thank you, Kay, for sending this link. Wanted to post it again in case people missed it in the comments section:

The link to the House Concurrent Resolution supporting Pregnancy & Infant Loss Awareness Day and calling for a presidential proclamation regarding the same is here.

Next time you see me out of sweatpants and a t-shirt, look out!

Fertile women dress to impress, U.S. study finds

A reintroduction to the word “glum” by my lady-when-waiting. A perfect way to sum up my current mood. As she pointed out, it’s an eyeore-sort-of-a-word that doesn’t come up nearly enough even though it fits those moody days where you can’t quite pinpoint what’s wrong. It’s up there with gloomy, though “gloomy” has a goth-teenager-writing-bad-poetry feel to it.

So glum.

Glum.

Sigh.

You come to the computer, filled with deep thoughts about medical controversies and medical discrepancies and differing opinions. And then you stare at the screen for a while and finally decide to type in what you read from Preventing Miscarriage.

First off, though I had initially been a little put-off with the opening of the book (it had a tinge of manic cheerleader: you can have a baby, you will have a baby, go team!), perhaps because I don’t like people to make promises that they can’t keep to all readers. But I grew to love this book when the river of information began flowing. Mostly because reproductive technology changes minute by minute and even books written two years ago seem outdated in light of new discoveries.

The only drawback with this book is that the “interview” stories comes from his patient base. And all but one person interviewed was ultimately successful in carrying to term. Therefore, take their glowing reviews of the author with a grain of salt. Then again, since the author practices in New York and seems to have many tricks up his sleeve, he may be someone who you’d want to schedule a consult with if you have recurrent loss or recurrent unsuccessful IVF cycles.

When I broached the topic of clotting and immunology disorders with my OB, I had no idea about this can of worms. I was confused by his reaction, but after hearing your stories and reading a few books, I’m beginning to understand that there are whole layers of in-fighting (sometimes connected to off-label use) within the medical community. Sort of like the Sharks and the Jets. And like the Sharks and the Jets, anyone who cavorts with a member of the opposite side is in danger of…a sound rejection and mocking (which doesn’t sound dangerous, perhaps, but try having someone mock you when you are strung out on hormones and grasping at anything that is going to get you–and keep you–knocked up. Not a pretty picture).

This is from the book: “IVIG has been used by doctors for over 28 years to treat autoimmune diseases such as multiple sclerosis, but it is new in the treatment of miscarriage and IVF failure. This is an ‘off-label’ use for the drug–a new use for an already approved drug…(p. 187)”

Which is what made me pause. I had thought that IVIG was a new treatment–and it’s not. It’s an off-label use. And more on the politics of this in a moment.

One of his patients stated this: “I admire the doctors who are prepared to stand up for the immunology treatment. If no one was prepared to fight the conservative ways of medicine, we’d never get any changes accepted. It seems to me that it’s become quite a political issue. Some doctors refuse to treat women immunologically, even after several failed IVFs. So the women have to go secretly to get the treatment. I’ve heard doctors say IVIG is like witchcraft. One screamed at his patient and told her to get out of his office, then he slammed the door behind her. But women talk to each other or search on related Internet sites.”

Not being a doctor, I don’t really understand the controversy that surrounds off-label use of accepted treatments. And what goes into establishing a drug’s usage in the first place. I can understand doctors rejecting non-approved medications–especially if taken in conjunction with treatment prescribed by your doctor (though, with a situation like Domperidone, which is approved in other countries, I’m betting that some of the decision-making comes from pressure from the drug industry lobbyists). With doctors, I understand the desire to have control over a situation you are being asked to control.

But I’ve seen this before when the lactation consultant recommended Reglan (don’t do it, don’t do it) in order to increase milk production (instead of doing something like…oh, I don’t know…checking my prolactin levels and making sure that I still produce prolactin and it wasn’t wiped out by…oh…fertility treatments or something). Reglan is actually a reflux medication, but it has the added benefit of increasing milk production (if you produce a normal amount of prolactin in the first place). An extra use, let’s say, to an already established medication. The OB waved the whole thing away at first, but later gave in with a “if it’s what you want to do” (can we note, for a moment, the fact that he too didn’t offer to run some simple blood work when I told him that my milk still hadn’t arrived after three weeks? It wasn’t until months later that I saw the endocrinologist when my new OB sent me).

And perhaps it’s just my perspective, but the controversies over off-label use seem to pop up quite often when it comes to women’s reproductive health. Which goes hand-in-hand with the lack of desire to be agressive and treat a problem. Or search for the root. Again, my experience is limited to matters of women’s reproductive health. But I would love a study done that looks at off-label usage of medications and see how quickly they’re established as commonplace, accepted treatments when they’re outside vs. inside women’s reproductive health.