By Wendy Ponte
Issue 113 July/August 2002
Ten years ago I stood in a temple in the Kamakura district of Tokyo, staring at hundreds upon hundreds of gray Buddha statues. Ranging in size from around 4 to 12 inches, they lined walkways, went up steps, and edged paths. Some were adorned with beads and flowers or wore little hand-knit caps; others had bibs with cartoons and white, ruffled baby hats. They stood silently amid the rock arrangements and soft bamboo trees. Their sheer numbers were breathtaking. Later I learned that this temple was a place specifically for women who had had pregnancy losses-some early, some late, even some whose losses where the result of intention to end a pregnancy.
It is only now, having experienced both successful childbirth and a recent miscarriage of my own, that I know how significant that temple is and how few places there are in our culture to really mourn the early loss of a pregnancy. Anyone who has gone through this experience knows what it means to mourn a dream, an infant that never was, yet was somehow already a part of you. Perhaps the hardest part is how rarely such loss is acknowledged by those around us, and how few miscarriage rituals exist.
Most people do not realize the depth of mourning that many women go through or understand how long recovery can take. "It turns out that the worst part was not the miscarriage itself, though that was pretty terrible," says Cathy Berger of Hoboken, New Jersey. "It is constantly being aware of where the pregnancy would be right now if it hadn't happened. I would have been just three months away from giving birth." Berger is lucky to have a supportive partner, Adriana Pacheco, who cares about her. "Sometimes, though, I talk it about it so much that I'm sure Adriana is thinking, 'When is this girl going to get over her obsession?'"
There is also very little understanding of exactly what causes miscarriages and what can be done to prevent them. Women tend to blame themselves for the loss when, in all probability, there was nothing they could have done to prevent it.
The veil of silence that our society casts over the topic of miscarriage makes it very hard for women and families to get the information and help they need when they go through this surprisingly common experience. "I think it's important for people to realize how devastating this can be emotionally, far more so than they ever would have imagined," says James Woods, director of Obstetrics and Fetal Medicine at the University of Rochester and author of Loss During Pregnancy or in the Newborn Period.
Although experts of all kinds, from midwives to grief counselors, agree that our culture is not very good at mourning this type of loss, many hospitals are still doing little to deal with women compassionately. "Oh, this happens all the time," is what parents are often told. Such words, and the medical practices that go along with them, clearly do not acknowledge how devastating the experience can be.
Supporting the Mourning Process
For most women, the first clue that miscarriage is poorly understood comes in the emergency room, or even in their own doctor's office. Medical personnel can be amazingly insensitive to women's feelings, according to Perry-Lynn Moffitt, coauthor of A Silent Sorrow. "They're very dismissive of this as an event worthy of grief. Doctors often say, 'Don't worry, you can get pregnant again,' without acknowledging that you were already attached to the baby." As soon as a woman becomes pregnant, Moffitt says, she starts to fantasize about how the expected baby will fit into the family and whether it's a boy or girl. To be dismissive of that compounds the grieving process. "If people know it's appropriate to grieve, they will express it and actually go through it more quickly."
Cecilia McGregor, of Minooka, Illinois, went to her local hospital when she began to spot at ten weeks. An ultrasound revealed that there was no longer a heartbeat. She and her husband then sat in a room for close to four hours, knowing the baby was not alive, waiting for a doctor to tell them what to do next. Finally McGregor was sent home and told to come back two days later for a scheduled D & C.
She returned, having carried her dead fetus for two days, and asked the hospital staff what would happen to the remains after the D & C. At first she could not get an answer. Several days and many phone calls later, she was told that the remains would be cremated and buried. Later, when she tried to find out where the fetus had been buried so that she could visit the site, her phone calls were not returned. Eventually McGregor found out that her baby had been disposed of in the hospital incinerator, along with medical waste. In addition to feeling largely ignored in the midst of the enormous grief she was experiencing, she had been given blatantly false information.
To help women work through mourning, Perry-Lynn Moffitt suggests trying to see the fetus, if possible. Without exception, every woman I spoke to who did see her baby after a miscarriage took tremendous comfort from the experience. "All those feelings about having a real baby are completely confirmed," notes Moffitt. A fetus is generally removed intact during a standard D & C, so there is no reason why a woman should not see it. Some doctors and nurses may balk at the request because they think it will be too painful, but, in fact, the opposite is true.
Guilt is a common emotion after miscarrying. "I know one woman who had hung curtains a couple of days before the miscarriage, and she felt terribly guilty about it," says Moffitt. "Even her mother-in-law said, 'Well, if you hadn't hung curtains…'" Actually, there is very little the average healthy woman can do to completely disrupt a viable pregnancy. "I think it's important for people to realize that the day-by-day things we do have very little effect on miscarriage. If one is not told that, it's possible to blame oneself," says Woods.
Guilt can play a significant role in women who have autoimmune problems. Susan Eddy, of Manassas, Virginia, has a condition known as antiphospholipid syndrome (APLS) in which autoantibodies cause blood clots to form. If a clot forms in the placenta, the fetus may be deprived of oxygen and nutrients, causing growth retardation or miscarriage. Eddy has had five miscarriages; at least three could be attributed to APLS, even though she took every possible medical precaution. Knowing your own body is harming the fetus is a tough burden to bear.
Whether a woman has a condition that causes recurrent miscarriages or simply experiences a single one, the pain of this type of loss can be unique and ongoing. Connie Jenkins, of Valley Park, Missouri, who has a condition called polycystic ovarian syndrome and miscarried at eight weeks, found the process very different than grieving for other deaths. "With the loss of a parent you lose the present and the past," she says. "With a miscarriage, you lose the future."
Many women find that, to varying degrees, most people are not comfortable discussing loss. Connie Jenkins had friends who would virtually hang up on her rather than discuss her grief. Susan Eddy kept the ashes of her boy, lost at 17 weeks; many of her friends considered this morbid and did not understand that it made her feel better.
Sometimes it is the woman herself who avoids discussion of the loss. Julie Petty of Sugar Hill, Georgia, who has had four miscarriages, thinks many women don't talk about it because of an overwhelming sense of failure. "My first miscarriage was a huge blow to my self-esteem, partly because I come from a very large, fertile family." Petty had wanted to have children while she was still in her twenties and had planned her life accordingly, even choosing a job that would work well for a woman with a family.
Having to deal with expectations that were not met is even more acute in women who are a bit older, according to Woods. "In many cases these women have controlled everything in their lives…They may have put off having kids because they've been consumed by their careers. Then they lose the pregnancy, and all of a sudden those things [business and success] seem pretty hollow."
A partner's reaction to loss can have a huge impact on a woman and on the relationship between them. Most women I interviewed commented that their partners grieved differently than they did. The mother's grief is centered on the loss of the fetus. While also grieving this loss, a lot of the partner's pain is centered, instead, on the woman. Watching a partner's physical and emotional pain can be very difficult indeed.
Perry-Lynn Moffitt calls this "incongruent grief." "Usually the partner is not as focused on the pregnancy," she says. "Whereas you can feel changes from very early on, for the partner it's more like a piece of news." There isn't the kick in the belly or the extreme exhaustion, symptoms whose disappearance serves to emphasize the enormity of the loss.
Moffitt recommends that partners set aside time to talk about the loss every day. "A husband comes home from work and he sees that his wife has had a decent day and she's not bawling her eyes out, so he thinks, 'I won't bring up the loss.' And the wife thinks, 'Well, I had a good day, and he seems pretty happy. Even though I'd like to bring it up, if I do, it'll just depress him.' So she doesn't and, after awhile, she starts to think, 'Maybe he didn't care about the baby the way I did.'"
Telling small children about the loss is also challenging. My five year old cried brokenheartedly when I returned from the hospital and gently told her what had happened. For weeks afterwards, she asked a lot of questions, and I answered as simply and honestly as I could. When I felt sad, I told her, so that she would understand what was going on.
Moffitt emphasizes how important it is to give children some explanation and not to avoid talking about it. Some children may blame themselves, thinking that the baby didn't grow because they had ambivalent feelings about it. Parents need to keep their eyes open for big changes or regressions, like serious backtracking in potty training or unusual aggression. When explaining a miscarriage, or any death, to a child, do not describe it as "like going to sleep"; this can cause some children to become terrified of going to bed at night, or to see their parents sleeping.
Very young children may not need to be told at all. When Cathy Berger began bleeding, she and her partner sent their two year old, who had not yet been told about the pregnancy, to a sitter overnight. They have not noticed any signs that she is at all aware of what happened.
Other techniques that can be helpful to the entire family, according to Moffitt, include holding a ceremony to honor the baby or creating a memory book. Many parents give names to their miscarried babies. Unfortunately our culture has no established rituals concerning miscarriages. Some women save everything they can that seems like a tangible reminder of their pregnancy: home pregnancy test sticks, early sonogram pictures, or even lab results. Some, like Susan Eddy, have their babies cremated or buried. Planting a tree or flowering bush in the baby's honor can help. Writing poetry, as Julie Petty does, can be cathartic.
Seeking professional help is beneficial and sometimes absolutely necessary. There are support groups for women who have miscarried [see sidebar]. Private counseling is also a good option. Women who miscarry will experience the same kind of postpartum depression that full-term pregnancy can bring. A lot of this is due to hormonal changes, but the presence of grief makes it much more acute for many.
What Happens Later?
What is most surprising about miscarriage is how long the grieving continues. The night before my last birthday I had a terrible time getting to sleep. I finally recalled that my birthday was also when my due date would have been. At the start of my pregnancy I had been delighted that the two would coincide and had retained that connection in my mind. I spent a fair amount of my birthday with that sad sense of longing. Renewed grief at the due date or at anniversaries of the loss are very common.
Coming to terms with miscarriage involves a fundamental shift in how we look at the world and ourselves. Stacey Dinner-Levin writes on Georgia Reproductive Specialists's website, www.ivf.com, "In spite of my new knowledge that things happen that cannot be controlled, I must call upon the places within me that tell me I do have control over much of my life and use this control to aid my healing."
Connie Jenkins found, after some time had gone by, that she was able to experience real gratitude for the eight weeks that she had her baby daughter, whom she named Hope Marie "for the hope she gave us." This is not to imply that she would want to go through it again, but she is grateful that she now knows it is possible to get pregnant, and that she and her husband could live through the experience and try now to help others do the same.
Some women face big decisions after they've gone through their initial grieving. Should I try again? Am I ready to try again? Julie Petty, who suffers from luteal phase defect and incompetent cervix, was told that if she conceives again she will need surgery to sew her uterus shut in the early weeks of pregnancy. Even with this precaution, she will most likely not be able to carry a baby past 26 weeks, meaning that she and her husband will face the risks that accompany extremely premature babies. "I'm having to face the truth that I may not ever be able to have kids biologically," Petty says.
Many women use their experiences to help others and to change the way our society views the subject of miscarriage. Perry-Lynn Moffitt, who had eight miscarriages, began to do grief counseling and then wrote her book in an effort to validate other women's experiences. Janet L. Sha wrote Mothers of Thyme after her own losses. The book explores the role miscarriage has played throughout history and the rituals many cultures have used to get through the pain of miscarriage.
Cecilia McGregor, angered by the way her hospital treated her requests for information about how her fetus had been buried, decided to try to change the law to protect parents in the future. As a result of her efforts, the Illinois State Legislature recently passed a bill that gives parents the right to choose how their fetus's remains are disposed of. [Though this new law is helpful to grieving parents, activists warn that a trend in current legislation to assign rights to fetuses could later be used to undermine pro-choice laws.]
Connie Jenkins and her husband created a grieving journal for parents who have experienced a pregnancy loss. The journal asks a series of questions that can be used as a jumping-off point to write during the mourning process. It is distributed by the National SHARE office (see For More Information).
These women have made huge efforts to change society's outlook toward miscarriage by writing about it, changing laws, or becoming grief counselors. Anyone who experiences miscarriage, or knows someone who experienced it, has the opportunity to contribute as well. All it takes is a willingness to take this grief seriously, to listen, talk, and share.
Maybe someday our culture will have a place for mourning equivalent to the graceful Buddhist temple I saw in Japan. In the meantime, we all need to create our own places, inside our homes and with our friends, to honor the babies we never had.
FOR MORE INFORMATION
Allen, Marie, and Shelly Marks. Miscarriage: Women Sharing from the Heart. John Wiley & Sons, 1993.
Faldet, Rachel, and Karen Fitton, eds. Our Stories of Miscarriage: Healing with Words. Fairview Press, 1997.
Friedman, Lynn, with Irene Daria. A Woman Doctor's Guide to Miscarriage: Essential Facts and Up-to-the-Minute Information on Coping with Pregnancy Loss and Trying Again. Hyperion Press, 1996.
Ilse, Sherokee. Empty Arms: Coping with Miscarriage, Stillbirth, and Infant Death. Wintergreen Press, 1992.
Kohn, Ingrid, and Perry-Lynn Moffitt, with Isabella A. Wilkins. A Silent Sorrow-Pregnancy Loss: Guidance and Support for You and Your Family. Routledge, 2000.
Lanham, Carol Cirulli. Pregnancy after a Loss: A Guide to Pregnancy after a Miscarriage, Stillbirth, or Infant Death. Berkley Books, 1999.
Semchyshyn, Stefan, and Carol Coman. How to Prevent Miscarriage and Other Crises of Pregnancy: A Leading High-Risk Doctor's Prescription for Carrying Your Baby to Term. MacMillan, 1989.
Sha, Janet L. Mothers of Thyme: Customs and Rituals of Infertility and Miscarriage. Lida Rose Press, 1990.
Woods, James R., and Jennifer L. Esposito Woods. Loss During Pregnancy or in the Newborn Period: Principles of Care with Clinical Cases and Analysis. Anthony Jannetti Publishing, 1997.
The Compassionate Friends, PO Box 3696, Oak Brook, IL 60522-3696; 877-969-0010; www.compassionatefriends.org.
National SHARE Pregnancy & Infant Loss Support Inc., St. Joseph Health Center, 300 First Capitol Drive, St. Charles, MO 63301-2893; 800-821-6819; www.nationalshareoffice.com. This organization sells memory books, remembrance boxes, and other items helpful in creating rituals appropriate for miscarriage loss.
National Council of Jewish Women, New York Section, Pregnancy Loss Support Program, 820 Second Avenue, New York, NY 10017; 212-687-5030; www.ncjwny.org/contact.htm. Offers free nationwide telephone counseling.
www.chem-tox.com/infertility/ - Environmental Causes of Infertility - looks at studies concerning miscarriage and/or infertility due to environmental reasons.
www.fertilityplus.org/faq/miscarriage/resources.html - Fertility Plus - is an information clearinghouse for support groups, chat groups, medical information, and on-line memorials. Books about miscarriage can be ordered on this site.
If you want more information about miscarriages, see the following articles in past issues of Mothering: "Miscarriage: The Unrecognized Grief," no. 47; "Loving the Baby You Lose," no. 25; and "Miscarriage," no. 19.
Wendy Ponte writes about families and children. She lives in Brooklyn, New York, with her husband, Bob, and daughter, Adelaide, age 6. This article is dedicated to the little girl she lost in 2000 and to the child from Brazil whom she is adopting this summer.