yours sincerely, the clinical genetics dep't.

"The cause of her demise was early onset cardiomyopathy."

Commonly referred to as DCM. The knew from day one what was wrong with her heart. They credited my instincts for sensing something was off, for bringing her to the A&E that morning. I was worried about her loss of appetite. Never in my worst nightmare did I envision we'd end up riding to the children's hospital in the back of an ambulance by mid afternoon.

They also told us that day that they would likely never be able to tell us the underlying cause.

Unacceptable. Horrifyingly unfair. You are DOCTORS. Giving me the information I need to help her get better is your JOB.

We had absolutely zero control over the situation from that point forward. She struggled for the next week before we lost her after the longest night of our lives.

"I am pleased to let you know that again, no abnormality was identified. Whist this is good news, it leaves us with an uncertain situation once again."


That's it? That's ALL you can give me? After a year of candidly discussing how much of her DNA was left, your desire to preserve the precious reserves in the event that some discovery was made? THAT IS MY BABY you're talking about in goddamn remaining measurements, for the love of all things remotely sensitive.

"We have tried to explore the possible options as to the aetiology of the cardiomyopathy identified in Sadie and we remain without a definitive answer."

Then honestly? What the fuck ARE you good for. Honestly.

"This means that we are left with a small residual risk of similar problems happening again in any future pregnancy."

A small residual risk. How do I wrap my head around 'a small residual risk' as it applies to the life of my child? I can wear a helmet. I can tell him to put a condom on. I can wait for a green light before crossing. What can I do to mitigate the risk of going through it all over again? Much more importantly, putting another child through it all over again?

"I would advise you to contact me when you confirm a pregnancy at home in order to enable me to arrange the relevant scans for you."

Well if I were you Honey, I wouldn't go out and buy stocks of Clear Blue Easy any time soon. Trojan, perhaps?

.::.

I'm going through a bit of a bitter phase lately. I hate that I still get angry at the world, but it's still there, simmering right under the surface. It gets worse the more I put pressure on myself to gather the proverbial balls and start taking folic acid.

I like my questions to be answered, and I typically 'need' to make my decisions from an informed point of view. If I'm being really honest, I regularly wonder why it couldn't have happened to someone else. Someone awful and cruel. Someone who 'deserved it'. 

Without the control I would normally exercise in another paramount life situation, I am left feeling weak. Feeling weak piques my temper. I'm not proud of this, but there it is. As I work to not let it seap through the seams to stain the relationships in my life, I wonder how thousands of other parents in our situation have learned to deal with the same situation.

.::.

I think this time around I am asking for help.

I would really, really love to hear from parents who have been through experiences with genetic counselling, whether your results were definitive or inconclusive, like ours.

I would really, really love to hear from parents who went on to have more children despite the risk of a recurring condition.


.::.

If your loss was due to a potentially genetic condition, how did you deal with the decision to try again? Were you able to put the stats from your mind and forge forward with hope? What did you find helped you in the process?

In Your Head: An Interview with Dr. Sara Corse, Ph.D., Clinical Psychologist

Seeking help from a therapist in the aftermath of babyloss often raises conflicting emotions within the bereaved based on their preconception of grief, and of the psych-profession in general. "I'm not depressed, I'm grieving!" babyloss parents scream from their blogs, in defense of their decision to not seek outside help.

Maybe.

Do we really know the difference between the two sets of emotions? And why are we all worked up about seeing a therapist anyway? Does it signal that we're weak? Can't handle it? Need to take our ugly emotions inside, out of public, into an office with a shut door? Or (gulp) maybe we're even a wee bit crazy?

What about those of you who sought help and were confronted with professionals who told you to buck up? Who didn't understand what infertility and babyloss had to do with each other? Who glossed over the loss and focused on something else -- or vice versa, assumed the loss was the be-all-and-end-all to your problems? And you were left wondering: was it them, or me?

In order to try and clarify some of these issues I went directly to the source. Dr. Sara Corse is a psychologist who specializes in grief counseling and the author of Cradled all the While, a memoir of her experience in dealing with her mother's terminal illness. Dr. Corse sees individuals, couples and families at Council for Relationships in Philadelphia. (Disclosure: I, Tash, interviewer, saw a grief therapist regularly, until recently. I consider it on the whole, a positive experience.)

Tash:  Thank you so much for agreeing to this interview. How does one become "a psychologist who specializes in Grief Counseling?" That is, are there special courses or training that you do?

Dr. Corse: There are several professional pathways to working with people who are grieving. A grief counselor may have training as a psychologist, social worker, couple and family therapist or nurse. Grief is a normal life process, and as such is covered in courses on lifespan development. Therapists learn to work with both normal and complicated grieving in courses and supervised experience in counseling. Some programs offer semester-long courses in grief and there are many opportunities to specialize through self-guided readings, advanced supervision, workshops and conferences.

Why did you decide to go into this particular avenue of psychology?

I developed an expertise in grief counseling several years into my career, motivated by my own experience of loss. When I was 36, I cared for my mother as she was dying of cancer. I’d lost my father to a heart attack when I was 18, and I was struck by how different the two losses were for me emotionally. I have always been one to read everything I can get my hands on when I’m trying to process something distressing, so I read widely on death and grief. I also began writing what became “Cradled all the while” a few months after my mother’s death, and found the process of writing to be helpful, both in terms of my own grief and in terms of opening my interest in grief counseling. It is more than a decade since my mother’s death, and I now have a wide and varied clinical practice. About 20% of my clients come specifically for grief counseling and many others have had losses in their life that they have not fully grieved, and this becomes part of their therapeutic work.

I know I felt this early on (I no longer do) and I've seen it expressed by others: how do you answer the grieving parent who responds, "Well what do you know! Have you ever been through this?" What is it exactly that you can offer someone regardless of whether you've been through that particular situation or not?

It is common for people who are grieving to feel very alone with their experience. There is often a deep desire for connection with others who’ve been through the same thing, and at the same time, a wish for acknowledgement or appreciation that their loss is unique. I openly share with clients whether or not I have experienced a loss like theirs personally. In fact it is sometimes more difficult to work with someone who is grieving a loss similar to my own, because I have more of my own experiences to filter out in order to be responsive to the client’s emotions. What I try to offer all clients, however, is an open-minded curiosity and interest in their unique story of loss and a commitment to accompany them in their grieving process.

I know you don't want to start analyzing people who you don't even know, but are there any ground rules for how someone would know perhaps it's time to seek out this particular kind of help? I know a common refrain around here is, "Of course I'm depressed! My baby died!" and some people are just reluctant to seek out this kind of help due to monetary constraints, preconceptions regarding psychotherapy that were in place before their loss, or just not understanding the profession and what it can offer.

To understand when it’s time to seek grief counseling, it might be helpful to first have an idea of what normal grieving looks like. I like Theresa Rando’s model of mourning (grief refers to emotional, behavioral, physical and social reactions to loss; mourning refers to the work of processing and integrating the experience of loss).

She calls the first phase of mourning the Avoidance Phase, during which time the person in grief comes to recognize the loss. This includes acknowledging the death and working to understand the death.

The second phase is the Confrontation Phase, in which the grieving individual experiences the deep emotional pain of the loss. The work of mourning during this phase is reacting to the separation from the loved one through feeling, identifying, accepting, and expressing one’s emotions. It also involves identifying and mourning secondary losses that coincide with or develop as a consequence of the initial loss, such as the loss of the role relationship one had or would have had with that individual. During this phase, mourners recollect and reexperience the deceased and the relationship—reviewing and remembering their life, and reviving and reexperiencing the feelings engendered by that relationship. The person in mourning relinquishes old attachments to the deceased and to previous beliefs about how the world works.

The final phase of mourning is the Accommodation Phase. A new relationship is developed with the deceased, new ways of being in the world are adopted and a new identity is formed…one that incorporates the experience of grief and loss but is not wholly defined by it. And finally there is a reinvestment in life. The process of mourning a specific death can take place over many months and years, and may be revisited and reworked at different points throughout life.

This model of “normal” mourning serves as a backdrop for addressing complicated mourning. (I use quotes because the word normal seems to trivialize the pain of grief. I know that when I have been in mourning, nothing felt normal about it, and I wouldn’t have wanted anyone to suggest that it was). Complicated mourning is associated with several risk factors. These include specific circumstances of the death, such as a sudden, unexpected loss, death from an overly lengthy illness, the loss of a child, or the perception that the death was preventable. Other risk factors are related to the griever’s prior or concurrent condition, such as previous losses that were not fully mourned, high levels of life stress, depression and anxiety or a perceived lack of social support.

Grief counseling can help with both types of mourning, but is particularly useful in complicated mourning (or during complicated periods of normal mourning). So how does one know if it’s time to seek counseling?

One indicator that counseling might be helpful is feeling stuck—as with struggling to move from the Avoidance Phase of mourning into the Confrontation Phase. Denial is sometimes a cause of that feeling of stuckness. It is often a feature of the Avoidance Phase, manifesting either as not acknowledging the reality of the death or not acknowledging the feelings associated with it. Denial is not something we do, but something that happens—a natural psychological reaction which provides us with a time-out—a temporary delay of grief until we can gather the psychological resources necessary for experiencing the devastating pain associated with the loss. Although initially adaptive, if denial continues for too long, it becomes maladaptive and delays us coming to terms with the loss. Counseling can offer support in coming to acknowledge and confront the grief.

Another indicator is a persistence of depression or anxiety. Grief and depression share common symptoms, such as sadness, difficulty sleeping, loss of appetite and loss of energy. But in grief, our moods, such as sadness, anger, despair, or hopelessness, are triggered by sights, sounds, memories and thoughts about the loss. In depression, the symptoms are more persistent and pervasive. In grief, moods and symptoms change over time—from acute grief, which may be debilitating and immobilizing, to later stages of mourning when feelings can be bracketed—at least enough to function at work or at home. The feelings may not be any less strong and may still hit powerfully and unexpectedly, but they can be felt and expressed without interfering with overall functioning. In depression, bracketing is far more difficult. Mood and energy are more consistently down.

In terms of how long is too long for feeling depressed during normal grieving, some professionals use two months as a marker. On the one hand, I think 2 months is too short a time to diagnose depression in someone who is grieving the death of a child. On the other hand, if someone is struggling with feeling depressed, and having trouble resuming normal activities two months after the death, therapy can be such a helpful tool that I encourage it even if it is a part of grieving and not depression.

We've all been told at least from within this community that grief is a normal life process, and there is no wrong way to grieve. What benefits are there then to seeing a therapist as opposed to, say, duking it out on your own?

Here are some things clients have shared with me about how therapy has been helpful for them:

* feeling validated, feeling heard, feeling listened to

* feeling not alone: being able to reflect on and express their feelings with another person rather than keeping them inside

* not feeling blamed or judged

* appreciating that they don't have to reciprocate with the therapist--they don't have to take care of or listen to the therapist's feelings. They don't have to prove to the therapist that they will be okay. They don't have to take any responsibility for making the therapist feel like he or she is being helpful.

* being able to talk about the experience as many times in as many ways as they want or need without worrying about being a burden.

* being able to ask questions and get feedback and learn a framework for understanding their experiences that can support them through the phases of mourning.

* being encouraged to explore feelings that they may shy away from with the support of the therapist, and thus learning how to tolerate these emotions as they come and go during mourning.

* having a space to grieve that feels safe and where time and expectations don't (or shouldn't) matter.

* being able to talk about their feelings about or worries about other family members confidentially, and explore in therapy ways to address them.

* with couples, helping partners understand and appreciate the different ways people have of mourning, and learn to support each other and stay connect through the grieving process.

* having a place to explore other issues that are kicked up by the loss and may be important to address at this point in life.

Do you have any suggestions on "finding a good fit?" I feel as though I rather lucked out, although I did look for someone who specialized in "grief." Others in these parts have not been very fortunate in finding doctors that they feel are helpful (some sound downright oblivious to the basic issues surrounding infant death). What should we look for when we go in the first time (or few times)?

* someone who makes you feel comfortable telling your story and sharing your feelings.

* someone who has some experience with working with grief.

* someone who communicates an interest and curiosity in you.

* someone who will answer your questions, even if they come across as challenging, without being defensive or dismissive.

* someone who will engage with you around questions of fit, and doesn't suggest that he or she is the only person who can help you.

* someone you respect.

* someone who respects your boundaries—not imposing their beliefs or experiences on you and not pushing you before you have developed trust.

Along the lines of "there is no wrong way to grieve": It seems to me that, sadly, for some members of society at large there are indeed "right ways." It's not uncommon for us to occasionally get comments to the effect of "hurry it up already," or, strangely, "You need Grief Counseling!" One of our contributors (Bon) recently wrote a hospital to ask them to change the language on their fund-raising literature as she found it offensive to someone who had lost a family member at this institution. The campaign went public, a newspaper picked a line out of Bon's argument, built a story around it, gave it a controversial title, and then posted it on the internet -- and opened the comments. The public comments were stunningly offensive in my mind, one of them though told Bon to "Get Grief Counseling."

I thought that was a rather strange insult; it seemed to be indicating that the commenter was uncomfortable with Bon's emotions and that Bon was better off dealing with these feelings privately (preferably in an office with a doctor present, apparently) -- not publicly. But it also really tiptoes the line as to how the public at large views therapy, and it's worth.

Our society does communicate a strong message of intolerance for the wide range of feelings that grief entails. Tears and sadness, maybe. Anger and advocacy, not so much. And our society follows up the intolerance for the full range of emotions with intolerance for any of those emotions that last longer than a few days or weeks. Bon handled the whole situation, from beginning to end, with grace and balance. She was attuned to the impact the hospital’s fundraising letter had, not just on her but on any parent who’s baby did not survive, and took action to raise the level of awareness and sensitivity of the fund-raising world to this point of view. The public comments suggesting that Bon get grief counseling miss the mark. In fact, a healthy processing of grief often leads to an action such as Bon's. When we have done (or are doing) the work of mourning, we are able to speak out regarding the universal truths of grieving and loss and can advocate for societal change. When we embrace the full range of feelings that loss brings to our lives, and integrate our most painful experiences into a new way of being in the world, we find energy for transforming our experience of loss into something positive for others.

What do you see as the biggest hindrance to grieving?

I don’t think there is one big single hindrance, but there are several roadblocks, some internal to the person who is grieving and some external. Earlier I mentioned denial. It is the persistence of denial, not its early existence, which proves problematic. If we cannot sustain knowledge of the fact of the death and the irreversibility of the death, we cannot mourn. Another hindrance to grieving is the inability to gain necessary information to answer questions about how and why the death occurred. We often hold off on feelings of loss until there is greater understanding.

External hindrances include the impact of commonly held myths about mourning, such as the notion that grief follows a set path or sequence of stages, resolves in a matter of months or comes to complete resolution. Another external hindrance for parents grieving the loss of a baby is society’s tendency to minimize the loss. In fact, grieving the death of a child means not only experiencing the loss of the brief relationship, but also the loss of potential, about which they are continually reminded. The perpetuation of societal attitudes about grief makes it hard for people in mourning to acknowledge their feelings, both to themselves and to others, to be patient with themselves and to seek and gain support from others.

What then do you see as the most helpful thing (or things!) one can do to process grief?

In terms of denial, there are various experiences early on that can help grievers acknowledge the death and begin to experience and express their feelings. These include having the opportunity to hold or touch or view the body of the deceased, and to participate in rituals that acknowledge the death, such as a funeral.

As the process of grieving continues, it helps to talk about the death and any feelings, and to find people who are willing to listen and ask questions.

Participating in a support group with people who are experiencing or have experienced a similar loss can be helpful for exploring and validating feelings. This includes on-line support groups.

It helps to create rituals or memorials that are meaningful. Some people plant a tree or garden, donate to a cause, or launch an initiative in their loved one’s memory, enacting love and the pain of loss in a way that benefits others.

And as we’ve discussed, grief counseling is helpful, particularly when we feel stuck or alone, when we are experiencing a complicated period of grieving or when we have an inner sense that in processing this loss, we are provided an opportunity for making other important life changes in therapy.

How do you feel about online support -- like this site -- or blogging as a means of self-help?

I think it is a fantastic medium for several important processes of grieving: The work that people do in writing about their experiences, whether blogging or commenting on other people’s posts, is transformative. The writer must engage her or his emotions in the crafting of a post, which then offers both an expressive outlet and a mode of working through the experience that deepens personal understanding and connection to the experience. In posting on the internet, writers have an immediate outlet for sharing their experiences with others. Because there is an intended audience, the emotional, intellectual and creative work of blogging is different from personal journal writing—in considering what one wants to share publicly, the writer’s perspective is lifted to the universal (or at least in that direction). This process of moving from the personal to the universal is something that gradually happens during the process of mourning, and writing for an audience facilitates it.

Blogging also offers a wonderful way to network with others who have experienced something similar. Particularly for those who are new to grief, being able to read and comment on posts by people who are further along in their mourning can be very validating. For parents grieving the loss of an infant, being part of a blogging community is a way to create a set of loving relationships around oneself and one’s lost baby. Sharing grief this way brings meaning to the baby’s short life, and when others in the blogging community respond to or even anticipate one’s own grief reaction, the grieving parent feels far less lonely.

The one caveat I would mention about on-line communication is that it is different from face to face communication in terms of how people filter emotions, opinions and reactions. On the one hand, people may hide certain reactions and reveal other reactions in order to gain social acceptance or approval. On the other hand, sometimes people are inappropriately unfiltered in their reactions, such that they say things and say them in certain ways that they never would if they were face to face (internet bullying, perpetuating conflict and misunderstanding, etc.). So I would encourage people to continue to nurture supportive face-to-face relationships for grieving as well.

Have you sought out therapy in the aftermath of your babyloss?  Why or why not?  Did you find it useful/helpful?  

 

'tis the season

For every adult in the kitchen there appeared to be two or three children running between rooms, blitzed on sugar from the chocolate fountain and marshmallows they were using for dipping. Wrinkled party dresses and cheeks smeared with sweetness, they were enjoying the freedom granted by their parents’ own distraction – mainly champagne and a recently restored vintage jukebox. A head collided with the stem of my glass and kept moving, unfazed, back to his friends all up way past their bedtimes.

.::.

'Cardiomyopathy is a chronic and sometimes progressive disease in which the heart muscle (myocardium) is abnormally enlarged, thickened and/or stiffened. The condition typically begins in the walls of the heart's lower chambers (ventricles), and in more severe cases also affects the walls of the upper chambers (atria). The actual muscle cells as well as the surrounding tissues of the heart become damaged. Eventually, the weakened heart loses the ability to pump blood effectively and heart failure or irregular heartbeats (arrhythmias or dysrhythmia) may occur.'

.::.

One of the younger boys came in, crying over some rough play happening in the next room. He’d been wearing a toque the whole time and now pulled it off as he found his mother. He was soothed with some kisses to his cheeks and bald head before running back to the action.

“Yes he’s bald. He’s got leukaemia, he’s been in remission since March. We’ve got two more years of treatment.”

She went on to tells us about how she worries for his future; as a teen and adult will he lead an incredibly healthy lifestyle, or will he feel invincible having beaten cancer, and abuse his perceived strength?

The hostess, the wife of a friend, went on at length about how scary it must be – the thought of losing a child. How utterly terrible it would be to lose an only child.

It was right around the time the walls began to close in on me.

.::.

'Cardiomyopathy is nondiscriminatory in that it can affect any adult or child at any stage of their life. It is not gender, geographic, race or age specific. It is a particularly rare disease when diagnosed in infants and young children.'

.::.

He found me on the front porch, trying to regain control of myself, tears streaming down my face. I was as embarrassed as I was upset and wanted to scream when he asked me what was wrong. I stared through the picture window at the enormous twinkling tree he and their two kids had decorated that morning. I forced some deep breaths and pulled out my mobile to call a taxi.

.::.

We finally received Sadie’s post mortem report a few weeks ago. Any hope I had been holding on to that it would reveal some extraordinary insight about her condition was dashed. Waiting had given me a reason to tuck that part away; I could put off thinking about future children because I didn’t yet have all of the information I needed. There had to be something else, some tiny scrap of information resembling an explanation for it all. Going through the document with her doctor made me face what I have been refusing to believe since he told me so on the day I met him. We would likely never find out the cause.

With nothing left to wait for I know I should be thinking about what I expect from the future. Our genetic counsellor told us that based on what information they do have, the odds of us having another child with cardiomyopathy are 1 in 10. She chose to pitch it as a 90% chance that any future children will be perfectly healthy.

My husband asked me afterward whether I’d buy a lottery ticket given those odds. My answer was simple. Of course I would. Because I know I would survive losing.

We’ve all become much too aware of the fragility of life, regardless of what took our children from this world. I would like to hear how other babylost mamas who went on to have more children came to the decision to try again. How long did it take for hope to outweigh your fear?

PubMed Says: GBS infection in pregnancy

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.