PubMed is a database of original journal articles in basic biological sciences and medicine maintained by the National Institutes of Health (NIH). I am, by virtue of my education as well as my temperament, a PubMed addict. That is to say, in researching my medical care, I like to go straight to the horse's mouth. So today, in the spirit of sharing what I learn in my digging and in hopes of said digging benefiting others, I am inaugurating a new periodic series at Glow in the Woods-- PubMed Says. For the first installment of the series, I am discussing an issue of interest in managing a subsequent pregnancy-- intrauterine infections with group B streptococcus (GBS).

Our immune systems are really a wonder of efficiency and adaptability. In fact, they are essentially mini-evolution machines, running in real time.  You see, with the number of pathogens we have the potential to encounter in our environment, encoding even a single fighter molecule for each of these would require more genes than we have in our entire genomes. Not to mention that pathogens evolve just like everything else (think new strains of flu every year), and so having static defenses is only marginally better than having no defenses at all. Ok, let me qualify that-- we have static immune systems too (skin being the biggest organ and biggest participant in that system), and we would not be able to hold off the assault of all the pathogens we encounter in our daily lives without that innate immune system. But neither could we do without the adaptive one-- the one we hear the most about, the one that has those famed antibodies as major players.

Antibodies are molecules made by the cells of our adaptive immune system that can recognize specific portions of specific pathogens. They are generated randomly, but according to rules-- one component of each specified type is picked randomly, and components are assembled in specified order. Sometimes the joining of the components is a bit off, which provides for even more variability.

Everything in biology happens via interaction of surfaces, tiny, microscopic shape fitting. Molecules are themselves signals, and their interaction is the passing of that signal. That, combined with the vast number of antibodies we generate, means two important things: 1) we can (and do) generate antibodies to pathogens we have never encountered before, to pathogens no-one has encountered before; and 2) we can and do generate antibodies that recognize our own molecules, molecules that are working hard to keep us chugging along. That last possibility is a problem, and the basis of autoimmune disorders.

So the reason autoimmune disorders are actually rare is that we also have a great way of "teaching" our immune system about self vs. non-self. We need it to know not to generate antibodies to self, only to the things that we would encounter from the outside, the non-self, the potential pathogens.

And this is finally where this little discussion becomes relevant to pregnancy-- the self vs. non-self education thing? It happens perinatally. Very loosely speaking, while the baby is cooking, the immune system is set to assume that everything it encounters is self, and so it kills off all the cells that would produce antibodies that can interact with these self molecules. At birth, the switch gets flipped, and the system gets reset to assume that everything new it encounters from then on is non-self, pathogen, signal for search and destroy. Pretty cool, right?

Well, there is one teensy-weensy problem. The problem, of course, is that baby in utero effectively has no functioning immune system. Ooops. But the good news is, the baby is in the sac that is in the uterus, and no pathogens are supposed to be able to get into the intact sac. And for most women, that is exactly how it goes. The bad news is that for some women some infections can get in, with fatal consequences.

This question is of special interest to me because my son A was infected with one of these infections, Group B Strep (GBS), and the pathologist ruled that to be a contributing factor in his death. Beyond the "what happened?" question, history of infections in the intact sac also have serious implications for any subsequent pregnancy, and that is why I chose this topic today.

A paper* (A 30-Year-Old Pregnant Woman with Intrauterine Fetal Death) was published last summer in the New England Journal of Medicine (NEJM), that both describes a particular case of a fatal GBS infection, and does a nice job reviewing in brief the general state of knowledge about causes of stillbirth in general, and infections in particular.

The case described in the paper is sad and tragic, and all too familiar to many of us here-- normal pregnancy with some minor causes for concern throughout, resulting in fetal death and stillbirth in the 40th week of gestation.  Although the text uses medical jargon, the upshot is that upon delivery the baby looked fine, with only the skin changes as a sign of having been dead for about a day being notable. In other words, without an autopsy there would have been no explanation for this tragedy, and no information to guide the family in making decisions about a subsequent pregnancy.

Multiple causes of stillbirth were considered, including fetal anomalies (ruled out by autopsy), maternal disease (discussed and found unlikely due to medical history), unexplained (always popular, no?), and fetal infection. According to the literature, infections account for approximately 10-25% of stillbirths, with significantly higher rates in economically depressed areas and in developing countries.

In light of what I said above, it should be pretty clear that any infection that can breach the sac is likely to lead to unfortunate consequences. Infections can be caused by bacteria, viruses, fungus, or protozoa. In addition to direct fetal infection, infections may also cause stillbirth via placental damage or severe maternal illness. There are very few pharmaceutical agents available to treat viral infections even in adults, and as far as I know there is not much that can be done for a fetus infected with a virus.  Yeast (a fungus) and various protozoa have been reported as causes of stillbirth, but extremely rare causes. What I want to do here is focus on bacterial infections, and GBS infections in particular, and then discuss management of a subsequent pregnancy if a diagnosis of infection as a primary or secondary cause of stillbirth was made or suspected.

GBS is known to be common in genital tract, and a large percentage of healthy adult women are colonized, i.e. have GBS in their vagina or lower intestine (This meta-study from Europe shows rates of colonization of 6.5-36% with great geographic variability) .  Recognition of GBS as a human pathogen did not occur until 1960s. In the 1970 it was recognized as a leading cause of neonatal infection and an important cause of maternal uterine infection. Since then, screening protocols have been put in place to identify women colonized with GBS, and antibiotic treatment during labor is recommended for women found to be colonized. These treatments are aimed at reducing the rate of neonatal infection, and establishing these guidelines has led to a marked decrease in early neonatal GBS infections.

In addition, and more relevant to our discussion here, 4-10% of stillbirths in United States and Europe are thought to be caused by GBS infections. Thus it is known that GBS can cross intact membranes and cause infection of amniotic fluid and/or fetus. In addition, GBS is associated with some cases of PPROM, and in at least one study, for at least one population, has been shown to be the leading cause of PPROM.

GBS, like other bacterial infections known to cross the intact membranes and cause stillbirth and other adverse perinatal outcomes, is an ascending infection, meaning that it rises up from mother's vagina, anus, or rectum, to the uterus. In most cases, infection occurs after the rupture of membranes, and that is why the guidelines for treatment of colonized mothers call for treatment with antibiotics while in labor.

As I mentioned above, this is an adequate protocol for most mothers. However, for those of us who have had infection, particularly bacterial infection, ruled to be a cause of stillbirth or PPROM, it is wise to consider additional measures in a subsequent pregnancy. I would, in abundance of caution, also suggest that families where the cause of stillbirth was unexplained, particularly those who did not have an autopsy performed, or whose autopsy did not include a report on possible infections, consider these additions to their subsequent pregnancy care protocol.

The NEJM paper, after providing fairly conclusive evidence for GBS being the cause of the stillbirth in the particular patient, includes the following possible interventions (beyond the general guidelines referenced above) aimed at attempting to prevent a recurrence of stillbirth caused by GBS:

• Screen for GBS rectovaginally early in pregnancy and suppress or eradicate detected colonization with antibiotics. (It is worth noting that colonization with GBS can be intermittent, that treatment is not always successful at completely eradicating colonization, and that re-colonization occurs in up to 40% of subjects within 4 weeks.)
  
• Screen for GBS in patient's sexual partners and suppress or eradicate detected colonization with antibiotics. (Same caveats as above.)
• Advise abstinence or condom use.  (Evidence that GBS is sexually transmitted is weak. In the words of the article authors, "Both interventions are relatively harmless, but compliance may be poor.")
• Vaccinate the mother. (No vaccine is currently available.  If it does become available in the future, it will not protect fetuses before 32 weeks of gestation because IgG antibodies that would be the actual mechanism of the protection are transferred across the placenta only poorly before that gestational age.)

My own protocol for my ongoing pregnancy includes early and frequent urine screenings for GBS and other bacteria. If and when any are found, I am treated with antibiotics in hopes of preventing an intrauterine infection.  This intervention was proposed by my OB, with the caveat that there have not yet been studies to show the effectiveness of this prevention method. I was more than happy to agree to this protocol, as this is pretty much the only thing we can actually do to try to prevent a recurrence.

Obviously this protocol is most useful for tracking GBS and other bacterial pathogens. I have not done enough research to comment on what measures might be able to prevent a recurrence of other types of infection. However, in the abundance of caution category, I would suggest that it might be wise to treat the ability of any type of previous ascending infection to cross the membranes as a red flag for the possibility of other ascending infections being able to do the same in subsequent pregnancies, i.e. that it might be useful to apply the protocol for attempted prevention of bacterial infection in cases where other infections were implicated in a previous pregnancy. This is a conjecture on my part. I do not know of any studies that quantify risks of different infections following a previous case of any given infection. However, each one of us, in each of our subsequent pregnancies, is concerned with the sample size of exactly one, and therefore, we, in consultation with our health care providers, can and should decide which protocols would give us peace of mind in addition to which are incontrovertibly scientifically justified.

I hope you found this useful, or, at least, interesting. If you have ideas for future installments of this series, please let me know.

*I can not place a pdf of the paper in public domain here. But I do have it (as well as the pdfs of the other papers mentioned in this entry) , and if you are interested, please email me through our contacts page, and I will be happy to send it to you. 

I don't remember what I was wearing that day. I remember my long black winter coat because before I left I asked Monkey for a hug. But I don't remember what I was wearing under it, what I must've seen all day as I caught sight of myself-- my sleeves as I typed, my pants as I sat down, my belly as I balanced the laptop on my lap while I waited for Monkey at gymnastics that afternoon or as I waited for the kicks that never came that night. I remember the dinner I ate as I tried to coax those kicks, but I don't remember what the shirt was that covered the belly on which I balanced the plate. I remember that the radio was on as I drove to the hospital, and I remember that I thought the program was interesting, but I can no longer remember what it was about. Now that I know that the full moon was in fact supposed to be there, I can verify that the memory that started knocking on my brain's door recently, of the full disc as I drove, wasn't a figment of my imaginataion fabricated later on-- I really did see it. But I don't remember what I was wearing. Not as far as anyone else could see, at least.

I remember what I was wearing under my shirt. A bellybra, that wonderful contraption that distributes the weight of the belly over the whole back, making it much easier to function. Even if I didn't rememeber, this detail I could reconstruct, as I never went a day without it the last couple of months of A's pregnancy. But I do actually rememeber. I remember because the nurse asked me about it as she was preparing the probe to look for the heart beat. I gave her a glowing review, and she said she needs to remember it for next time because her back was killing her the last couple of months with her first-- what with being on her feet all day. I wonder, given what happened in the next 5 minutes, does she remember it now?

When I first discovered that I couldn't remember what I was wearing I thought of it as a good thing-- next time around, I reasoned, I wouldn't have bad associations with any of my maternity clothes, I could wear all of them again. Except for that bellybra, of course.

I am 28 weeks 4 days along today. If you come to my house, I doubt you can miss the belly. And yet, when I am out and about, I still wear a shawl. Unless it's over 90 degrees outside, and then I put on this net-like thing that goes over my head, is long, and a bit shiny, but is far less of a  disguise, though it still makes me feel a little covered, a little protected.  I waddle, by the way. Thanks to the pelvic pain that makes it hard to walk straight. So I waddle, and the belly sticks out farther then the boobs, and has for a couple of weeks now. And still I insist on having something that gives me some illusion of maybe fooling someone out there.

At first I thought that the shawls were my protection against the stupid that is out there, against the untouched who think a pregnant belly equals a live healthy baby 40-X  weeks from now. I didn't want to talk to them. I didn't want to deal with their "congratulations" and their "is this your first?"s. I didn't want to give them an opportunity to tell me all about their utterly normal life where assumptions of invincibility hold. A bit later I understood that I was also avoiding having to tell people that I am not jumpy and comfy because the baby before this one died. I didn't want to have to tell the story, anew.

It's a weird thing, really. I want people to know about A. How few people know that he existed used to be one of the biggest crazy-makers in my head. It's better now, the crazy is, but this particular thought is still sad to me. It seems, though, that I need to control the context in which I want people to learn. I don't know that it is even possible, but I seem to want to introduce him in some way that isn't all about pain. I want people to see that the pain is there because of how much we love him, how much we wanted him, how much we miss him now.

I remember, so very vividly, being pregnant with A, out and about with Monkey, and conscious of how lucky we were and of how much our luck can hurt to look at. I was thinking of infertiles at the time, but boy can a sight like this hurt a dead baby mama's heart.  I remember, too, last spring seeing pregnant bellies and babies wherever I turned my head. A veritable sea of happy that had no room for me. I started coping by making up sad stories for these happy people I saw on the street-- this one had five miscarriages before this baby, that one needed an IVF or three. I knew, even as I was making up these stories that they can't all be true. But that was what I needed to do to be able to navigate the world around me.

Recently some of the dead baby bloggers have been confessing to having a hard time with other people's pregnancies.  Is it any wonder? And what I realized, reading these bloggers, is that my shawls are a little about all of you too. If I can help it, if I can help it at all, I don't want to add to your hurt. I don't want to, as Bon so aptly put it, stab you with my roundness.

My sister is getting married this weekend. My parents arrived a few days ago and other family is about to descend on us in mere hours. To some degree, I have been measuring this pregnancy in intervals of and between significant events. For the last few weeks I have been terrified that this baby would die before the wedding, adding new layers of terrible to what would be horrific any day all on its own.  Before that I was similarly scared he would not make it through the week Monkey and JD spent in the Old City. 

That Monday, Memorial Day in fact, I wan't feeling as much movement as I had been used to. I tried the water, and the couch, I tried this, that, and the other. And finally I couldn't handle it anymore, and I went in to triage. A friend of mine is a high risk OB in my practice, although he didn't start there until last summer. When I first heard that he was joining the practice, I thought I didn't want him to ever have anything to do with my care-- I didn't want him to have to feel bad if shit hit the fan again. But as I pressed the intercom button outside of triage that Monday, I saw my friend walking down the corridor. And suddenly I very much wanted him to be there. I was alone and scared, and not until that moment did I know how much I wanted to at least not be alone.

It is good to be a friend of the attending, let me tell you.  He brought the shiny new ultrasound machine, not the old clunker that told the doctor all those months ago that A was dead. He was gentle, and kind, and attentive, and exactly what I needed. He didn't just do the one peak to make sure the heart was beating-- he sat there for ten or fifteen minutes carefully studying everything, watching my son wiggle behind my anterior placenta that with its movement-cushioning ways was the likely culprit behind that day's freakout. Twenty more minutes on the monitor and one fine-looking strip later I walked out of the triage room next door to the one in which they told me A was dead. I was light-headed, shaken a little.  But I managed to only be ten minutes late for dinner with a friend. And the next morning I took a deep breath and pulled that bellybra out of the drawer.

When A died, six months seemed like a ridiculously long way off, like it should be enough time to close the gaping wound, to let my heart scar over.  And now, nearly a year and five months out, what I am wondering is whether there is ever an end to the layers left to uncover. I suspect not so much.

I recently told a friend, who happens to be a former colleague, that I watch House for professional development. She laughed. Nevertheless, it's true-- my training focused on the molecular level, and not until my current job did I need to know much about organismal, particularly human, biology.  Medical story lines on the show are pretty well researched, and they make interesting and weird connections-- all pluses in my book. But the real reason I can watch the show in that particular way is the writing. No, not because it's that good, or because they place all the clues out in the open. No, it's because they are forced to write the episodes starting from a medical scenario. 

What that means is that while they can and do develop the characters of the doctors on the show to reveal facets of personality or elements of background, to fill in the dimensions, to make them believable, at least to a degree, they have far less flexibility with the patients. If the patient in episode N needs to collapse unexpectedly in the opening sequence, pee blood right before the first commercial break, go into v-fib seven minutes later, fail to respond to the first several treatments House was sure were going to work, lie about something or other, and finally recover or die with enough time to spare to give some  screen time to the storylines about doctors' personal lives, well, that just doesn't leave much room for dramatic  and believable character development, does it? Which suits me just fine. If I don't buy the patient as a real character, I can concentrate on the medical aspects. So yes, professional development. With a side of ahem... eye candy, as my sister calls them.

One teeny tiny complication there-- they do develop their doctors as characters. Which is normally a good thing in a TV show. Completely messes with my frame of reference, though, when they make one of their own a patient. Can even make me cry when they then kill her. Yes, the season finale. Very well done episode, wherein they try and fail to save the life of one of their former colleagues who is also the newish girlfriend of the title character's best friend.

Tears show up for me a lot these days. Any report about collapsed schools in China is guaranteed to make my eyes water. Music can get me to well up, and I won't even watch some movies that I expect to be upsetting. And yet, over the last week I watched over a season of House on DVDs (thanks, sis), learned a bunch of new stuff, made some cool connections with the things I learned over this past semester, but didn't cry once.  I cried over that season finale, though. Couldn't articulate why. So I watched the second half again. Brilliant move, I know. But my need to know what was affecting me so much was greater than my need not to be affected again. I guess I can be analytical like that.

The second time I saw it, I knew right away. It was the dying doctor. Not that she was dying, but that she was making a choice, and articulating that choice. Her boyfriend asking her why is she not angry, why is she ok with dying. Because, she says, that is not the last emotion I want to experience.

She was dying. There was no way out. No choice, it seems. But she found something she had control over, and she made a choice. And the reason it made me sad, profoundly, deeply, for days after, is that I realized not everyone gets to make choices.

One of the things I try to do in my parenting, one of the things I articulate for my daughter is the issue of choice, of responsibility, of consequences.  Most choices children make are not of great consequence. You can choose to wear X or Y today. You can have this or that for dinner. But slowly, as they grow, so do their choices, and the consequences of those choices. Watching my daughter make increasingly more weighty choices has been one of the subtle pleasures of parenting.

I have appreciated for a long time,  from the very beginning, actually, that after A died, we did have some choices.  I chose to start the induction that same night, and to eventually accept pain relief, even though I wouldn't have likely for a live birth. We chose to name him, to hold him, to take pictures, to follow our doctor's recommendation and ask for the autopsy. We chose things after that too. Telling Monkey the truth, but not taking her to the funeral. Leaning on our friends, but not letting them come to the funeral either. Going back to work when each of us did. Many, many choices.

What I didn't appreciate, the way I never looked at this before was that making choices is yet another thing my son never got to do, will never get to do.  Babies have preferences, but no choices. His entire human existence passed, and he had no control of it, he never got to choose. I don't know what the last thing he experienced was. I do know he didn't get to choose it.

Maybe I am nitpicking. There are so many things that our babies won't get to do, so why am I focusing on this? My son also never drew a breath, but that thought has never made me sad for days on end. What is it about choice that makes it so fundamental to me, a loss in its own right? Perhaps it's all about what choice means to me. Autonomy, ownership, even avoidance of guilt. Because to me making a thoughtful choice means making the right choice.

I know that not everyone feels this way about having choices. I know people who hate having them, hate having to make them. So this is what I wanted to ask you today-- how do you feel about choices? Are they a cornerstone of human experience or a giant cosmic torture?

This will be short and sweet. Wordpress layout designers apparently blog about only happy shiny things. I deduce that because on their statistics page they label the day you got the most visits on your blog as, and I kid you not, The Best Day Ever. So Allison at Our Own Creation has to stare at her stat page defining the day she lost her daughter, Zoë, weeks after losing her son Lennox, as the best day ever. Every single day. Right.

We can change that. With a click. Two clicks, actually. One to go to Our Own Creation, and one to click through from there to the blog Allison was keeping for Zoë. Two clicks is all it takes to make every day from now on suck a little less for this one bereaved family. Two clicks before 8pm Eastern time tomorrow, Thursday, May 29th. Please.

New post from Janis  below this. 

Lest it appear that I am bragging, let me fess up-- I am sort of bragging. I have some incredibly supportive friends.  We've been through thick and thin together, many times and in many ways. When A died, we couldn't imagine not having them by our side, and for the most part, most of them have not disappointed. But even among the very good ones, some stand out in this meta-way that maybe only a true geek can appreciate. These friends not only do what is right, but they are the ones who can articulate why they do these things in this particular way. They are the ones, in short, with whom you can have practical conversations about needing that damned drink already and philosophical conversations about your experiences, the asshats around, about why they are such asshats, and about what it is about the asshats that gets you so much. My friend Aite is one of these very very good friends.

Our little forest camp fire here  hadn't even been going for a week when we got an email from a friend of a very newly bereaved mom. What can I do, she asked? What is there to do? A flurry of emails later, Kate put together the compilation of our thoughts and suggestions. Interestingly, that was also right around the time I had my little rant about the me-me-me type of "friends."

That was when Aite told me those two things have prompted her to formulate her own thoughts on being there for the friends in grief.  Which, given the kind of friend she has been and continues to be to me, made me think that her perspective might be at least as valuable as ours to other good friends out there, friends who want to do what's right but are not sure how.

And so, without further ado, I am proud to present to you my friend Aite and her thoughts on being there. She is around and reading comments. She is kind of shy, but she promised to jump into the conversation in the comments if warranted.

Aite:

One time someone I know asked on her blog what to do when a tragedy befalls a friend.  The post made it sound abstract, and most commenter didn't know it was precipitated by a stillbirth among our rather large group of friends and acquaintances.  One commenter (who recently lost a close relative) reminded the blog's author of an experiment when two groups of people were told to keep their hands in very cold water – it's harmless, but it hurts.  Both groups were to report the intensity of their pain on the same scale.  People in the first group went through the experiment alone while those in the second had one other person in the room.  This additional person did absolutely nothing, not even making an eye contact with the participant of the experiment.  It turned out that people in the second group reported less acute pain.  Clearly, the matters aren't that simple with grief, but my own comment built on the "presence in the room" analogy.  Here it is:

This topic cannot be discussed in the abstract.  Let me talk specifically about grief arising from irrevocable loss.  In such a case, saying things like "Everything will be all right" are out of question, by definition.  The comment about the experiment suggests that you should simply be present for your bereaved friend.  Using this analogy, before you can do anything else, you must enter her room.  It helps me to remind myself that it's not about me.  That thought helps to spend less time hesitating at the door before possibly deciding that it must surely be too late to enter now – no one expects you there anymore.  What are you going to say?  Where were you before?  Won't you somehow make it worse?  What if you end up looking stupid?  The point is that none of that matters very much because you, a friend, are by far not the most central figure in this situation, and the particulars of your actions matter infinitely less than the fact that there is nothing to fix.  What's wrong can't be fixed.  This is the essence of grief.  Do not try to fix the irreparable, and you won't say anything stupid and inappropriate that could hurt your bereaved loved one.  Her grief will not get worse if she voices her pain.  It's always with her.  By and by she is learning to live with it, and it may take up a slightly different place in her life, but this process never ends and it's pointless to wait for its successful completion.  And if she feels better right at this moment, it doesn't mean she is now better for good, and if she feels worse, do not be frightened, the rough patch will not last forever either.

Bereaved people often mistakenly believe that those around them forgot about their tragedy, or perhaps never cared in the first place.  Those around the grieving ones, in turn, mistakenly think (even more often) that people who suffered a loss above all else want to be left alone.  True, some of them do, but that happens orders of magnitude less often than we tend to believe.

You have to realize that things will never be the same for you either whether you try to be there for your babylost friend or hide under a rock.  If you bail out, it will cost you at least one relationship, and likely a good measure of self-respect.  It's not that a babylost mother is necessarily keeping a score on who's been a good friend (although she is certainly entitled to).  It's just that you can't count on preserving your friendship if you can't deal with her grief.  Staying by your friend's side though babyloss is challenging and scary in part because it will inevitably change you as well.  It may challenge your beliefs, your worldview, the way you look at people, they way you think, feel and behave in many instances.  It will give you knowledge in areas of life where ignorance is certainly bliss.  But it will allow you to continue and possibly deepen a valued friendship, to not be ashamed of yourself later on, and, well, to be of some support to your friend.

I think of my bereaved friend as the same person I've known all along, now in pain and grieving.  This way, our history together can serve as the starting point for how we relate to each other after her loss.  It's good if you can draw on things which always provided you with your strongest connections.  (If you bonded primarily over happy carefree pregnancies – tough.  You'll have to think of something else.)  You'll know best what you can offer to your friend, but realize that some of the offerings will have to wait for a bit.  Early on, concentrate on keeping up communication.  The more you communicate, the less you'll need to think how to do it.  It's your responsibility to keep your conversation from being awkward and uncomfortable, so don't expect your friend to be articulate or take the lead.  It doesn't mean she won't.  But it does mean you need to abstain from placing any expectations on her and your conversations.  Don't insist on her telling you what she needs right now.  She may or may not know or concern herself with that at this point.  If you stay connected, she will let you know in due time.  Get in touch with her often, ask if it's a good time to talk, and take cues from her on how long she wants to talk.  If you don't know where to start, ask her about something you two discussed in your previous conversation.  Express your concern about other members of her family.  If there was an initial outpouring of sympathy, do not be swept away as the tidal wave recedes.  Stay on.

You have to learn to put your babylost friend first in your relationship.  On the other hand, you are responsible for keeping yourself on a firm ground.  Hopefully you find other people who can prop you up.  It goes without saying that you must have your grieving friend's consent to discuss her situation with them, if you feel that's what you need.  But it's good to have someone to whom you can answer the question of how your babylost friend is doing in some truthful detail.  I've been lucky in that my husband lent a steady, unflinching compassionate ear.  I can mention to him still baby's pictures, cemetery issues, autopsy details, fears and grief without feeling like a pariah of the polite society.  If you have midwives or doulas among your friends, they could be of good support to you because they often find themselves supporting babylost families as well.   Stay away from people who are likely to suggest that you are enabling something unhealthy by being there for your friend, that you are reminding her of her grief and not letting her be all better already.  Such attitudes are likely to make you angry and frustrated.  Depending on your personality, you may try to take them on, but I prefer to avoid them.

Talking to mutual acquaintances
Early on you are likely to have a lot of conversation that start with, "Oh, have you heard what happened to the X family?"  When you answer yes and that you are in regular contact with the bereaved family, many acquaintances will share that they are thinking about it, but aren't sure what to do.  Communicate babylost parents' preferences.  Many people assume that it's somehow indecent to contact the family, especially if they haven't been in touch for a while, - that it betrays inappropriate morbid interest or something of the sort.  I ask such acquaintance if she would have contacted the family have the baby been born alive and healthy.  The answer is usually yes.  Then what's the reason not to send condolences?

Some mutual acquaintances will ask if they can do anything to help.  Again, communicate the family's preferences with respect to memorial services and charities of their choice.  There may not be anything the acquaintance can do for the babylost family, but depending on your relationship with the person who's asking, you might get some logistical support.  If you have small children of your own, ask people to look after them for a few hours so that you can spend time with your bereaved friends.  This is very concrete, emotionally uncomplicated and highly valuable help.  In some circumstances, you may need rides or help with shopping and cooking.

As weeks and months pass, people will ask you how babylost parents are doing. What and how you answer is important.  I usually say something along these lines: "Some days are better and some are worse.  They find certain situations especially tough, and sometimes those aren't the most obvious things and present themselves unexpectedly."  I typically qualify this with "naturally" and "of course" in a few places.  Here is why I think this works.  It's important for people to understand that babylost parents aren't "over it" and "all better".  It's equally important to make it clear that they aren't some kind of extraordinarily sad exception because they aren't.  That you in no way expect them to be.  That you don't suppose the person who's asking to expect such a thing.  You may hear, "But I saw them as such-and-such social function and they seemed just fine," refer to what I said above about being momentarily better or worse.

I believe there is one more reason to make whatever effort it takes to be there for your bereaved friend.  This reason, this goal is at the same time the most abstract and the most practical, the most ambitious and most naturally served by your effort.  Our social circles are large.  Bad things happen to people. It is important for us to learn decent, appropriate ways to respond to someone's crisis, both personally and on the level of our widest social circle.  The courage to respond appropriately comes from experience.  Contrary to the common exasperated cry of how hard, maybe impossible, it is to know what to do, the model is very, very simple:  remember that grief belongs to the mourner, come to her side, take cues from her, abide by her wishes, respect the finality of her loss.  Do not expect everything to be all right again, ever.  Do not leave.  By taking these simple steps you challenge, and maybe even shift, conventional wisdom (or, shall we say, stupidity?) that it's oh so hard to know how to respond.  Sometimes, for whatever reason, we personally aren't in a good position to help in a particular crisis.  Stepping up when we can, we can help ensure that no one we know is left all by herself with her grief in her room.

You know what annoys me, like, a lot? People around us who manage, effortlessly it seems, to make their interactions with us in our grief, yes, say it with me... all about them. People who make a production, often somewhat publicly, out of agonizing over whether to call their grieving friends, and of what to say. The sort of backdoor self-compliment highlighted on last night's 30 Rock-- "It's hard for me to watch American Idol because I have perfect pitch,"-- the "It's  hard for me to talk to grieving people because of how sensitive and considerate I am" sort of thing.

Luckily, we didn't get many of these directed at us. This past winter, though, I got to witness a public (in as far as an open post on the wilds of the internets is public) display of woe-is-me-I-want-to-be-the-bestest-friend-ever-but-
-it's-so-hard-how-do-I-make-everything-better bit. It took me a few minutes to figure out what was so distasteful to me in that piece of writing and the follow up comments from the author, but then I got it-- it was all about her, about her desire to fix things so she can be seen as the savior, the one who did the right thing, the rightest thing.

Now, I get that humans are self-centered animals, and I am certainly not blameless on that front myself. But dude,  if there is one area, one effing area of human interaction where it behooves you to check your shit at the door, this might be it. Don't you think? I get, too, that doing something, anything, makes people feel less powerless in the face of the big bad random universe. But see above re: checking shit. Because making yourself feel better at the expense of the person already in pain is.. how do I say it... oh, yes-- a pretty shitty thing to do.

This concludes the rant portion of today's post, and brings us to the part where I contemplate, much more calmly, I hope, thoughts this brought up.  

In that post, a few commenters tried, very gently, to tell the author that in grief there is no fixing things, that basically all you can do is be there for your friend, but she wasn't listening. But, but, but was all she had to answer. Finally, Aite, a good friend I've mentioned before, basically gave it to her straight-- it's not about you. Entering the grieving person's space should not be about worrying about how you will look doing the entering. You can't fix anything. Grief is what happens when there is nothing to do. Don't try to fix it, and you won't look dumb. You can't "remind" someone of their grief-- they remember all the time. Whether they want you to bring it up or wait for them to do so is individual, and you should follow your friend's lead in that, but assuming that people forget and you can remind them is pure wishful thinking.

My friend is mighty skilled in this art of abiding, being there for your friend, selflessly, at whatever distance and with whatever in hand your friend needs. I hope, too, that what we are doing here, in this space, is also very much abiding. Talking, listening, not trying to fix the unfixable. Now, if only laptops could dispense booze too... I'd send you all a drink or five.

So who is this grieving person now? If you are the one doing the abiding, who do you assume is in front of you? Is the grieving person changed, forever altered by the grief? Or is this the same person you have known all this time, only in pain and grieving? Are we changed or are we, at the core, the same?

My first impulse was to say that of course we have changed.  A deadbaby blogger who has since gone private was told by one of her friends to not let this change her. What a shitty thing to say, was my immediate response. Would you tell that to a mom who has birthed a living baby? Hell, no. It's a foundational value of our society that parenthood changes people. In the classical mythology of the media and entertainment as well as the assumed playground wisdom, there are things only a parent can understand. Condescending? Of course. But also pervasive and commonly accepted. So why would people not allow it as the same level of truth that having a dead baby should change you? Change you as profoundly and as deeply as having a live one is assumed to change you? And also, don't we all change just by living? Would you want to still be your high school self?

But isn't it also true that we are the same basic people, only now with extra crunchy shitty experiences included? Extra sad.  With extra tender feelings. Extra sensitive to things people say without thinking. Maybe even wiser and more compassionate. But with the same chewy center?  

What defines us as people? Are we changed abruptly, or are we in the process of integrating our grief into the fabric of our selves? Are we defined by grief, or are we living towards defining our grief as a part of our selves? Are we changed, or are we ever-changing?

Last year, while I was still in the very thick of it, Virginia Tech happened. I didn't watch much TV then at all, and certainly not much in the way of news. I heard of it on the radio, I think. What I did do a lot was read blogs and chat online, mostly with my friend Aite. One day she told me she was watching the coverage of the tragedy, and there was this interview with a father of a student who got killed. One question he was asked was "was he your only child?"

Would it have been any better if he wasn't? Not really. But it would be worse if he was. Facing a life with no surviving children is a separate pain. She is very thoughtful, my friend Aite, isn't she? This is something that stuck with me over the last year, this idea of how some things can't possibly be better, but there are ways in which they can be even worse.

I have been troubled the last few days. Perturbed, bent out of shape, preoccupied.  A comment, a couple of lines and a signature, is what left me alternatively dumbfounded and steaming. A comment that seemed to imply that we here have not so much to talk about because we are, none of us, bereft of living children and at the end of that road.

I never claimed or wanted the mantle of the worst case. In fact, somewhat recently, I finally, after thinking about it for a long time, wrote about one of my coping mechanisms-- the it could've been worse. There are so many ways in which my experience with grief could've been a lot worse. For starters, every time I hear a bereaved parent talk about the guilt they carry, my heart breaks. I have none of it. And this still sucks. Adding guilt on top of the grief seems like it would just be too much. I also had the very best, most compassionate medical care. I have friends who didn't run away, who still remember and take care not to step on my toes. And I have a living daughter. Validating her in her grief, acknowledging that she is a separate part of this story, that her loss is her own and must be respected and honored, all of this has been a challenge. But not one I would ever trade.

Yes, it could've been worse. It is worse for many, I believe. For parents losing their first-borns, how can it not be worse-- wondering whether there will ever be a living child in their home, many times a home lovingly picked in preparation for the arrival of that first-born? For parents who years after losing their child and despite trying and trying, and trying some more have not brought another into the world, how can it not be worse? For parents for whom lightening has struck two or more times, how could it not be worse for them?

So see, I have no problem with anyone telling me I am not the worst off. In fact, I'd be the first to say that. What I do have a problem with, a big huge problem, is with conflating me, an individual who grieves, and my son, an individual I grieve. Or any other baby anyone else grieves. I don't think the value of a child, value of each child to the universe and to their family, can or should be relative to what the family does or doesn't have.

We all grieve our children. We may grieve different things about them. For some it may be as simple and all encompassing as the huge void, the absence, and for them there is no need or use in dividing that void into bite size pieces. Others have come to believe that we grieve the potential. We grieve not knowing. Not knowing so many things. It kills me that I don't know what color A's eyes would've been. What he would've looked like when he smiled. What his laugh would've sounded like.

What has been so upsetting to me in thinking about that comment is the implication that these things I grieve should somehow be less important because he wasn't my first or my only. That not getting to know my son is less of a tragedy because I have a daughter. Or because I may yet get to know another son. The implication that seems to me to be trending towards the hated "you can always have another" line that is the very definition, the very embodiment of the cluelessness of the world around us. The implication that, if extended as logic requires, would indicate that first babies who die lose their specialness, their importance, or the amount of grief allotted to them if or when their parents bring home a living sibling.

Had they lived, our children would be seen and counted as individuals, judged, hopefully, on their own merits. Do they not deserve the same in death? To be seen and mourned as individuals? To matter as individuals?  

So this is my point, a fine one perhaps, but one that has asserted itself as supremely important to me over the last couple of days. The experience of loss, the human interactions of it, the physicality, the treatment we get from medical professionals, from our families, from our friends, the ripples, all of that can be worse.  The situation any given mother or any given family may find themselves in can certainly be worse. Comparing is human nature, and it is ok.

But not when it comes to the babies. I believe that placing differential values on the children based on what else is going on with the family should never be on the menu. Denying me my grief does not speak to who I am or what I have, either in abstract terms or as compared to anyone else. What it does is minimizes my son, makes him less than a person in his own right. And that is just not something I can accept. 

What I believe about each of our lost babies, regardless of anything else, is that they were loved, they were wanted, they are missed, and they are grieved. Other things can be worse. But this, the place where we all started this journey, this place can't really be better.