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LINDA LAYNE

Professor of Humanities and Social Sciences and
Director of Graduate Studies, Rensselaer Polytechnic Institute
“Prepared Pregnancy Loss – A Call for a New Standard of Care”
February 18, 2004

I have been working on the subject of pregnancy loss since 1986 when I had the first of my losses and my book, Motherhood Lost was published last year. In the last chapter of the book, I make a lot of suggestions about how the experience of loss could be improved. I am working now and coming to speak to you in the hope that we can work together to start making some of those changes take place. I will present a number of cases and then some questions regarding the adequacy of medical care that is now offered, some explanations for why I think that there are those inadequacies and I will end with a series of proposals about how I think medical care can be improved.

When I was married in February 1986, my husband extracted from me a promise that I would finish my dissertation before I got pregnant. I defended my dissertation on October 15th and conceived on October 31st. Fifteen days later, we were delighted that a home pregnancy test confirmed our wished for news and we called our parents on both sides and let them know that at long last a grandchild would be coming. This was going to be the first grandchild on both sides. The next three months were very happy ones indeed. I spent hours teaching myself how to knit and hours comparing the minutest detail of every little bodily change with any woman I met that had ever been pregnant embracing each and every one of those transformations as a sign of my new state of being.

Then on the evening of Friday January 16, in the thirteenth week of my pregnancy, I started cramping and spotting. I called the birthing center where I was a patient and they reassured me that many women spot during their pregnancies and that it may not mean anything. I was instructed to rest and to call again if it got worse. All through that night while my husband lay resting beside me, I kept a worried vigil. By six in the morning, I was bleeding profusely. I woke my husband and called the birthing center. This time the midwife told me to go to the emergency room suggesting that we call there ahead to let them know that we were coming. I was shocked and terrified to learn that no one would be accompanying me to the hospital. During my initial visit to the birthing center, they had stressed that if anything went wrong in delivery, and I needed to be transferred to a hospital, that they would go with me. They would be there by my side comforting me and advocating for me.

I hadn’t contemplated that anything would go wrong early in the pregnancy, but now that it had, I found that it had wrongly assumed that their principal of care would apply in these circumstances too. My husband called the hospital and the nurse that answered the phone asked my husband how much I was bleeding. He hesitated, not knowing how to answer such a question and she prompted, is she having to change a pad every hour or so? I did not own any pads and it had never occurred to me during the night how handy such things might have been in such a circumstance. Our panic increased precipitously when upon learning that I had been using bath towels and that I had been soaking them at a rapid rate, the nurse instructed us to come to the Emergency Room immediately.

Upon arrival, the nurses were kind and they counseled me not to give up hope. After what seemed like an eternity, the doctor came in and did a pelvic exam and gruffly announced that there was placental tissue protruding from the cervix. He then turned to my husband and asked when I had eaten last and then left the room without having ever addressed a word to me.

We still didn’t know what was happening. We knew that placental tissue protruding from the cervix was not a good sign, but we really didn’t know what it meant and we hoped that it was something that the doctor could fix. It was not until the nurse came in to tell us that I was being transferred to a ward to wait until my stomach cleared of food so that a D and C could be performed safely that we finally realized that we were losing the baby.

By the time we made it upstairs to a room, I was in full labor panting instinctually with each contraction and in condition to answer for the second time that morning all the bureaucratic questions that were required for admission.
At four o’clock that afternoon, they wheeled me on a stretcher down the corridor, hair in cap, IV in arm just like on TV to the glare of lights in the OR. I was put under and my precious pregnancy officially ended.

I spent that night in the hospital and was happy to be there in that unreal world as I tried to come to grips with this horrible, sudden turn of events. I was not ready to go back through the door of my house that I had left only that morning a pregnant woman and an expectant mother. That miscarriage was not only one of the worst experiences of my life, but the most confusing and I almost immediately realized that my anthropological training might help me to come to a better understanding of the sources of that confusion.

I joined a local support group and began investigating the experience of loss among support group members. Anthropologists specialize in a method known as participant observation, yet when I set about this new research, it never occurred to me that I would continue to explore this topic in such an active participatory way.
Ultimately, I had seven miscarriages, five before our two sons and two after. Together my miscarriages provide a fairly good overview of the range of medical experiences that middle class American women might have experienced during the last decades of the 20th century.

After that first loss, I switched to an obstetrician and when a ten week ultrasound revealed that the heartbeat that was present at eight weeks was no longer there, I was returned to the Princeton Hospital for another D and C. But, this time not to the Emergency Room, this time for a scheduled procedure with my own caregiver.

I had moved to Hoboken before my third pregnancy and was seen by a fertility specialist this time and once again a heartbeat that was present at eight weeks was not there at ten weeks. He arranged for me to have my D and C over the weekend in an abortion clinic in New York City so that when I left Monday morning for Jordan to lead a study tour of professors, that my miscarriage would be complete. Except for being heckled by protesters on the way in, this was by far the best experience I had. It certainly was not as scary as being in the ER and in this context; the context of an abortion clinic, having a pregnancy that did not result in a baby did not make me a failure. It was a routine, everyday occurrence.

For reasons that I can no longer recall, my fourth D and C was performed at New York University Medical Center where I had to spend two needless nights being awakened for a cardiogram, chest X-ray, and a complete family history that was required by all patients undergoing surgery there. It might have been with this miscarriage that I learned that the baby died right before I was scheduled to give a talk on the West Coast and I convinced my doctor to allow me to continue taking progesterone so that the pregnancy would endure long enough for me to go so that my personal loss would not be compounded by a professional loss.

The fifth miscarriage occurred after we had moved to Troy. Because my fertility clinic specialist was set up to monitor hormone levels on a daily basis because of his IBF patients, he gave me the option of either having a D and C, or letting my body do it on its own and I chose the latter. All in all this was a good experience with one caveat. I had mistakenly assumed that the miscarriage was over when I stopped bleeding. So, I was shocked a few days later when going to the toilet I discovered the embryo. It looks just like the pictures in the books and I was confused about what to do with it. I called my husband, but he refused to look at it and in the end, I flushed it down the toilet and then I regretted having done so.

I was present in 1991 when my son was born at a birthing center in Wyoming and in 1993 I was ready to try pregnancy again. I hoped that all those stories one had heard about infertile women being able to conceive after an adoption would apply to me and I did make it to twenty-eight weeks before I was hospitalized with toxemia and Jasper was induced at thirty weeks.

By the time Jasper was two, we knew that he had dodged the dire prognosis that had been given him when a great fore bleed had been discovered. Once Jasper was out of the woods, I wanted to try again. Perhaps the immune logical theory was true. Perhaps all those losses had been a learning process. With Jasper, it appeared that my body had nearly learned how to do pregnancy and perhaps the next time, I would be able to tolerate a fetus for an even longer period of time. Maybe even making it all the way through a normal pregnancy making it to an idyllic birth and the birth of a healthy baby.

Then came the sixth miscarriage. What was I to think now? I rationalized that maybe this recent miscarriage did not mean that the immune logical theory was incorrect. Maybe this time I had a normal miscarriage. It had just been a bad egg or a bad sperm or an error in early cell division. This time my D and C was performed by my doctor in his office. Although having the D and C there was superior to having it performed in a hospital, I found it very difficult to sit among all of those pregnant bellies in the waiting room waiting for the procedure. I lay on the table afterwards dreading to have to walk with my newly emptied womb past them on the way out.

A month after that D and C, I suffered acute abdominal pain, but when I called the doctor’s office, the nurse told me that I was probably just having ovulation pain and recommended aspirin and rest. When this terrible pain occurred a month later, I insisted on seeing the doctor and he confirmed my suspicion that my cervix was blocked with scar tissue from the D and C and that I needed to be dilated in order to menstruate.

This medical mishap convinced me to forego a D and C for my next miscarriage. I was somewhat more prepared for my second at home miscarriage in that a nurse had given me a prescription for Codeine and she had given me some guidance on how to know if I was bleeding to death. That last miscarriage occurred in the middle of the night at a stranger’s house when I was in the field doing research on a toxically produced miscarriage cluster in Oregon. I did not want to ruin my hostess’s sheets or towels so I spent the night huddled on her cold bathroom floor trying to remember whether it was egg sized or larger than egg sized clots that meant that I needed to get myself to the ER.

These seven cases raise a number of questions about the quality of care for this utterly common medical event. Why is it that despite the women’s health movement’s emphasis on empowering women by making sure that they know what they make expect during labor and what their options will be if difficulties arise that no such advances have occurred concerning pregnancy loss? Why is it that when I had my first miscarriage that I did not know that such a thing was possible? Why had the topic never been raised during my prenatal visits? Why hadn’t I been alerted to the possibility in either of the two books I had selected immediately upon learning that I was pregnant from the local bookstore? Why is it that in the 64 page booklet that is given to each patient on their first prenatal visit at my high risk OB-GYN practice that miscarriage is not mentioned until page 49 and then only four pages are devoted to it, whereas, in contrast, there are fifteen pages in this book on breastfeeding? Why is it that ACOG produces this pamphlet on repeated miscarriages, but does not have one for this far more common incidental miscarriage? Why had my midwives informed me of their protocol in case of emergency C-section, but not informed me of their protocol in case of miscarriage during those first three months when my chances for a miscarriage were fairly high and my chances for needing a C-section were zero? Why did the midwives not feel the responsibility to accompany me to the hospital? Given that pregnancy loss is a regular feature of emergency medicine, why did I receive such poor care from the ER doctor? Why is it in all the research that I have done that I have not encountered any other women who have had their D and C procedures for a miscarriage done in an abortion clinic even though I found this to be the most congenial setting? What are the pros and cons of using progesterone as I did to allow for a planned miscarriage comparable to a planned C-section? Why wasn’t I better prepared for the miscarriages that I had at home? Why hadn’t someone told me to cope with all the blood and given me suggestions or alternatives for what I might do with the embryo? Why is it that only two options for imminent abortion seem to exist? It is either submit to have perhaps unnecessary surgery or to be sent home completely unprepared to cope on my own? Why is it when it comes to birth that women’s comfort and the quality of their experience are given such attention but no such concern is offered to women who miscarry?

So, now we turn to the explanations. Most of the questions can be explained by the unfortunate confluence of three factors. The first is an unfortunate overlap in abortion politics with miscarriage because of the issues of fetal personhood relate to both abortion and what to make of a miscarriage or a later loss. Feminists have steered clear of this topic and have not embraced it as an important issue of women’s health.

The second explanation has to do with the emphasis in the women’s health movement on happy endings. So concerned have they been with wresting control back from physicians and from depathologizing pregnancy that negative outcomes have been segregated, minimized, ghettoized in books on pregnancy written by women’s health practitioners.
For instance, in “Our Bodies Ourselves”, which is often referred to as the women’s health bible, negative reproductive outcomes are segregated to a chapter of their own instead of being integrated into the four chronologically ordered chapters on pregnancy and birth. The subsections on miscarriage and ectopic pregnancy are not in the chapter on pregnancy. The subsection on stillbirth is not in the chapter on childbirth. Instead, these topics are lumped together in a chapter titled, “Some Exceptions to the Childbirth Experience”. This chapter is found after the chapter on postpartum. Indeed, in stark contrast to the other chapters on childbearing, which are peppered with appealing photographs of pregnant women as pregnant, laboring and mothering, we have some examples here. (Pictures are shown) Here is another page of those. We have many photographs of beautiful women having beautiful birth experiences. Instead, not one single photograph is found in the chapter on childbearing loss. Every other chapter of “Our Bodies Ourselves” is filled with beautiful women, including the chapter on elective abortion. Not one in the chapter on childbearing loss. There beautiful women and their longing for babies are visually erased.

Another example is found with “The Bradley Method of Natural Childbirth”, an approach that has been closely linked to the home birth movement in the United States. Even in their section of the Bradley Method Student Workbook, called variations and unexpected situations, there is not one page in the booklet on this. Where one might expect to find examples of difficulties, reproductive mishaps are starkly absent. The page is dominated with a large photograph of an attractive smiling blond woman nursing not one, but two healthy babies. Thus, even variations and unexpected situations are cast as ones with idyllic endings.

The third reason has to do with a patriarchal emphasis on the product of the seed. Barbara Katz-Rothman describes the patriarchal ideology as seed in, baby out. It is true that men and women are concerned with the health of their babies and do hope that the pregnancy will result in the birth of a healthy baby if it is a planned pregnancy or a wished for pregnancy. But, I maintain that women’s experiences have a value in and of itself whether or not there is a baby involved, whether or not there are benefits for the fetus. What we find here though is that when there is a baby involved, the midwives would come and tend me. But, once there is no baby involved, it is treated like a period. It is messy. It is unpleasant. It is a nuisance and women should just deal with it in the privacy of their own bathrooms. I don’t believe that this is right.

On to my proposals: I think there is a lot that could be done to improve the experience of pregnancy loss. My first set of proposals have to do with better preparing and better educating women and their partners before a loss. There have been great strides in the last twenty years in improving the quality of care for women after a loss, particularly later losses that take place in hospitals. Most hospitals now have bereavement teams and women are often moved off of the maternity floor and so forth. There have been great achievements there. Now it is time to work on preparing women better before a loss happens. I think that there should be some educational materials prepared that describe frequency, symptoms, medical options and consequences for future childbearing. The consequences are very small. This would be reassuring for women. Sometimes the objections that I hear from physicians about why don’t you inform people is that well, we don’t want to scare women or we don’t want to talk about anything unpleasant. What I am advocating here is for realization of pregnancy loss or facing up to reality and saying that this is a fact of life and you will be better prepared if you know about it. At first, I had thought that it should, and it says here that it should be presented at the first prenatal visit. But, after speaking to the medical students this morning, I got the good idea that it would be even better to do at the preconception visit. Of course, this only applies to certain types of patients that are seeking care in anticipation of a pregnancy. But, that would for those patients, often those patients for whom a pregnancy loss is extremely difficult, because they are patients that have had successes in their life, have not bumped into these kind of difficulties before. In any event, it would be great for these patients to know before they are even pregnant. I think ACOG should produce something and circulate this and have this in the hands of obstetricians.

I would recommend waiting to calculate and announce the due date until after the tenth week. I understand that if there is a heartbeat at ten weeks, the risk of pregnancy loss drops down to about three percent. There is no reason that one needs to know “the date”. The date is really a month, two weeks before or two weeks after at the first prenatal visit. We know that after nine months and nine months is a pretty good ballpark and we don’t need physicians to tell women how to be able to calculate. I would recommend waiting. It is in every pregnancy book. It is the first thing that you open. It tells you how to calculate your due date. This is setting women up for disappointment with the expectation that if you are pregnant, you are going to get a baby nine months down the road.

I believe that there should be pregnancy loss preparation classes just as there are childbirth classes. They would not need to be six weeks. One would be adequate. Not everyone would have to take it, but knowing that it exists and knowing that it is a possibility I think would be a great benefit to women.

I think that it would be good in doctor’s offices to refrain from encouraging prenatal bonding until later in a pregnancy, after the high risk for a pregnancy has passed. This would probably mostly involve retraining sonogram technicians. I understand that at clinics like the Planned Parenthood clinics, that the monitor is turned away from women, the heartbeat speaker is turned down and baby language is avoided. I think that this would be a good idea to do for all patients. They could at least tone down the baby language until at least the highest risk of danger has passed.

So those are my proposals for preparing women before the fact. Once a loss is imminent, I think it is important to offer a wider range of choices to patients. D and C procedures, I don’t know. I would like for physicians to think about whether these are necessary or are they unnecessary gynecological surgeries? What are the costs and benefits from both a health point of view and from a psychological point of view? I think they should be available as an option to women. There may be advantages to ending a pregnancy quickly once a demise has been discovered. But, I think there is a lot of room for improvement on natural childbearing loss. I think the model for home birth would be an excellent model here. The problem with home birth has to do with safety issues primarily around the safety of the fetus. Once the safety issues around the fetus are gone, home birth makes an excellent model I think for how to have the most humane kind of miscarriage. So, at home with a trained coach or a birthing assistant who can tell you if you are bleeding to death or if you need to be transferred to a hospital. They are able to deal with all that blood. They can take care of specimen collection if that is what the woman is going to do. They can reassure, massage, do hot packs, everything that can be done to alleviate the pain and the fear involved with a home pregnancy loss. An alternative would be to try and come up with a natural childbearing space in a medical setting, a designated space that would be something like a birth suite, but without all the high tech expensive equipment. The patient would still be supervised by highly trained medical staff. I understand that there may be difficulties with this in terms of finances and so forth, but these are the kinds of things that would be ideal from a woman’s point of view.

If women choose a home pregnancy loss, they need to be equipped with home pregnancy loss kits and there is a woman in Wisconsin who is now trying to patent such a kit, Sandy McLean, which would include disposable bed pads, sanitary napkins, specimen collection containers, pain medication, and instructions.

So, these are my proposals. Thank you very much.


 
Maintained by Gloria Smith
Last Modified: Friday, 26-Mar-2004 14:51:55 EST
Copyright 2003 by the Rector and Visitors of the University of Virginia