Pregnancy and infant loss exact a devastating toll on the women and families who must endure this experience. Making the transition from a silent delivery room or nursery to a normal but changed life challenges the strongest among us. Physical, emotional, and economic issues may further complicate the recovery process. The silver lining in this experience is evident in frequent examples of medical professionals performing at their most caring best. While physicians may be driven by the reward of assisting in nature's greatest successes, their compassion and empathy as fellow human beings are priceless when nature fails. This essay describes one woman's experience with pregnancy loss and her perspective on moving forward.
Pregnancy loss, Infant loss, Grief, Miscarriage
May be it is mostly bad luck. May be there are multiple medical and physiological reasons. Whatever the cause, I am among the population of hundreds of thousands of women in this country struggling to recover from the physical and emotional consequences of pregnancy and infant loss. When nearly one-third of pregnancies end in miscarriage, another 6 per 1000 pregnancies result in still births, and 6 in 1,000 live births are babies who die in the first weeks of life [1-3], this produces a substantial population of women coping with perinatal and neonatal loss. I am now a member of this group I never wanted to join.
Over the past three years I have had quite a time. I first experienced a relatively normal pregnancy ending with pre-term labor and delivery of a small (5 lb, 8 oz.) but healthy baby girl and a problem with placenta acreta. Next, I had an ectopic pregnancy that was ended after two doses of methotrexate. Then, my third pregnancy ended due to placental abruption and I lost my twin boys at 20 weeks gestation. I have also had three dilation and curettage/dilation and extraction procedures, three hysteroscopies, and one laparoscopic surgery. I have received multiple units of blood and platelets, and I am now under the care of three different obstetricians, as well as my general internist, as they all try to help me move forward and conceive again.
Through my experiences, I have met an astounding number of women dealing with similarly devastating pregnancy losses. Yet I have learned that despite human nature's irresistible urge to compare situations, no scale exists which weighs the totality of sorrow and personal tragedy. Each experience is different, and each is incredibly difficult. While for me, my first loss did not compare to the loss of my twins, this early first loss has proved to be especially difficult to accept because I have continued to second-guess the decision to take the methotrexate. Was it really an ectopic pregnancy? Should I have gotten a second opinion? What if I had waited longer? Would the pregnancy have been okay? Also, similar to many pregnant women, I had not shared the news of this first pregnancy with more than a handful of close friends and family members, thus making the loss more poignant because it was largely private.
So many factors conspire to make pregnancy loss both devastating and debilitating. When I lost my twin boys half-way through my pregnancy, I faced unknown territory. My labor and delivery were seemingly endless and un-anesthetized because my blood pressure dropped too low to permit me to receive an epidural. I struggled to recover from receiving multiple blood transfusions both during and after the experience. Afterwards, I certainly expected to be depressed and emotionally drained. But when I returned home, not pregnant and with no babies to hold, I also had to develop the physical strength and stamina to first stand and then to walk any distance as I recovered from over a month of bed rest. Then, adding insult to injury, my milk came in, engorging my breasts so painfully that I could not even receive comforting hugs from my family for two weeks.
I am fortunate in that I have a job as a university professor and health services researcher that is very flexible and not at great risk. However, I did have to go back to work. And for me, this involved finding a new route to work because I could not drive by the hospital where I lost my babies. I also found that for several months i was unable to tolerate small talk or even sympathetic comments from almost all of my professional colleagues. As a result, I was able to get to school and teach my students, but meetings and social interactions were impossible for me to endure for the entirety of the academic quarter.
In the privacy of my own home, I have been similarly fragile. My husband signed us up for caller ID but I did not answer the phone for a full three months. The mail has been similarly overwhelming, and while my husband has dutifully opened the mail, paid the bills, and responded to the wonderful generosity of friends and neighbors, I remain only vaguely aware of the growing pile of sympathy cards that I cannot yet read.
As I have started to re-engage with the world, I am surprised at my inclination to distinguish between individuals who "get it" compared with those who do not. Surprisingly common comments from well-meaning individuals I personally label as "clueless" are questions about whether we have considered surrogacy or adoption. Really? In retrospect, I believe these sincere yet inappropriate questions were aimed to help me by offering a "solution" to my apparent problems, yet these individuals' inabilities to recognize that there is truly no "solution" make me bristle.
Throughout my experience it has been extremely difficult to accept that I am part of a large statistical minority who are unfortunate, for whom the miracle of life fails to fully materialize. How could I be so unlucky as to lose so many babies, have so many complications, and have to endure so much grief? And now, having moved past some of the more acute stages of my grief, how come I have to be the one everybody refers other women to when they have experienced a miscarriage, an ectopic pregnancy, or a still-birth? This was not an area in which I ever intended to develop expertise, and I have had a hard time playing this role.
Becoming a member of this broken hearts club has helped me to recognize how little I do understand of others' situations. And I now understand that the best response under these circumstances is often merely, "I'm so sorry". I understand how people are very different in their responses to and experiences with grief, including the notable differences between most men and most women. My husband chose to read the paper, finding comfort in comparing our situation to situations of countless less fortunate others dealing with poverty, war, and so forth. I, on the other hand, found no comfort in this approach, and instead have watched endless episodes of Law and Order until I fall asleep.
I have been filled with anger and loss and grief on all levels. I am angry that I was not able to help our daughter with toilet training because I was on bed rest. Is this logical? I was stunned when, during my fourth-year review for the tenure and promotion process, my interim division chair stated that "the best thing for you [me] to do now would be to have another baby". Was he insane? And I have been unable to participate in therapy sessions or even attend church because I spend the entire time crying.
A silver lining for me from this experience has been the opportunity to see examples of medical professionals performing at their most caring best. Their compassion and empathy as fellow human beings are priceless when nature fails. For my husband and me, physicians, nurses, and hospital support personnel ranging from the chaplain to the people who cleaned my room were uniformly kind, sensitive, and patient. While we had to make decisions about baby names (we should name them?) and disposition (what was this?), people were supportive and understanding of the countless tears we shed.
As I write this essay, I am saddened by the knowledge that right now I should still be pregnant. I should still be on bed rest, trying to figure out how to continue my research projects while lying on my left side. I should be having trouble sleeping because my babies are kicking me in the ribs and jumping on my bladder - not because I cannot stop thinking about what might have been. I should be expecting to hold William and Brendan around the end of the year, and seeing if they are truly identical, and trying to figure out how to nurse two babies at the same time. Instead, I am wondering whether or not I will get pregnant again, and, if I do get pregnant, if, this next time, the pregnancy will last.
Yet, with all of this, I know I am one of the lucky ones. I have a wonderful, healthy daughter, I am still a few years from 40, and I can try again. If I do get pregnant, I will most likely receive aspirin therapy, have a cerclage, experience bed rest, and begin to enjoy the life growing inside me as soon as I learn I am pregnant. And thus I move forward, with a profound understanding that my losses will always be with me, that there are no guarantees for the future, and with profound thanks to the caring providers who have helped me along the way.