Cherish Corner - Family Bereavement Resources

The Kindness of Strangers
By Patti Hartigan
This story ran in the Boston Globe Magazine on 8/4/2002.
© Copyright 2002 Globe Newspaper Company.

Tens of thousands of women grieving over pregnancy loss turn to the Internet every day. It is the one place where they can receive unconditional, and immediate, support.

The first one was bad enough. That was back in 1993. After years of infertility, after years of being sliced and diced and tested and probed, Rita Gonzalez finally got pregnant. But she lost the baby. And then she miscarried again. And again.

Born and raised in Puerto Rico, Gonzalez had grown up thinking that the ability to bear children is a God-given, biological right. Feeling vulnerable and betrayed by her own body, she was desperate to vent, to scream, to rant - anything that would let her verbalize the internal trauma. Instead, she was surrounded by silence. "Nobody wanted to talk about it," she recalls today, her voice cracking.

Gonzalez swallowed her sorrow and buried herself in her demanding job as director of the National Protection Center at the Natick Soldier Center. Then, in 1998, out of the blue, she was pregnant again. But the baby had anencephaly, a rare neural tube disorder that is incompatible with life. She terminated the pregnancy, and the loss was devastating.

Gonzalez named her son Julian Alexander, and her eyes still cloud up when she talks about him. To this day, however, her own mother won't speak his name.

Again, silence.

And the saga didn't end there. Gonzalez lost three more pregnancies, the last in 1999, when she was carrying twin girls. Friends didn't know what to say; family members avoided the subject entirely.

This time, though, the silence was too much. Gonzalez, a seasoned professional who can hold her own in a room full of military brass, could no longer keep this pain bottled up. All the hopes and dreams of a lifetime kept imploding on her, so when she finally found a forum where she could unload, her sorrow and anger came tumbling out in raw bursts of catharsis.

"Hey, GOD, if YOU are listening, would you care to tell me why YOU have chosen me to be one of the oddballs in natural selection?" she asked. "I just want to know, where did my babies go? Are they SO precious that YOU in YOUR infinite power can't bear to let them go?"

Gonzalez wasn't speaking at a support group or at a church or at a therapist's office. Instead, she was posting her story on a pregnancy-loss message board on the Internet. There, she didn't have to pull herself together or prove her stoicism. There, she could fall apart and receive unconditional - and often instantaneous - support.

"With every loss, my womb goes silent, an eerie reminder of my inability to procreate," she wrote. "With every drip of another anesthesia, I become increasingly numb."

Other women wrote back, offering solace and sharing similar stories. One woman sent a poem about the children she would never know; Gonzalez still has it.

The simple words of online strangers offered the support that eluded Gonzalez in everyday life. "The Net makes you feel empowered," Gonzalez, 39, explains. "You don't feel like you're losing yourself every time you lose a child. You don't feel as hopeless and helpless, because you learn that someone else has been there, too."

Indeed, she is not alone. Tens of thousands of women like her are turning to the Internet every day. Lynne Barberian of Medford, for one, gave birth to a stillborn baby on March 22, 2000. Her daughter, Rachel Taylor Barberian, weighed 8 pounds, 4 ounces, and she was perfect - except for the fact that the umbilical cord was wrapped around her neck two times. "In the weeks following, I was, like, 'What do I do? Who do I turn to?' " Barberian, 33, recalls. "I wanted to know what to do with all of this anger, all of this grief." Eventually, she typed "stillborn" into an Internet search engine and found the Web site for the Mothers in Sympathy and Support (MISS) Foundation, an Arizona-based nonprofit organization. She bonded with the group's founder, who had given birth to a stillborn daughter in 1994, and found other cyberfriends who shepherded her through the grief process.

Donna Cushlanis, 38, of Yarmouth Port turned to the Net after the loss of twins early in her pregnancy. After years of trying to conceive, she and her husband were distraught, but they got precious little support from their care providers at a prominent Boston fertility clinic. Cushlanis says that during an ultrasound, a technician summarily informed the couple that the babies were not viable and sent them back to the waiting room without so much as a pat on the hand, despite the fact that Donna Cushlanis was sobbing.

The first thing she did when she got home was head straight for the computer. For the next week, Cushlanis was online constantly. It was her sole salvation. "Without it," she says, "I would have been on the funny farm, honestly. This is such a big taboo. Nobody talks about it."


It's a few days before Christmas 2000, well past midnight, and I'm planted in front of my home computer in a dark room illuminated only by the glow of the screen. My husband sleeps soundly upstairs while I surf the Internet. This is my late-night sanctuary, my private passion. No, I'm not peeking at porn sites or playing the stock market. Like the women whose stories are chronicled above, I am scouring the miscarriage bulletin boards, catching up with people I have come to know over the last year. I methodically - some might say obsessively - read each new post, following the stories of folks with screen names like StillHoping or LostAngels, women who, like me, are drawn to these boards after suffering recurring pregnancy loss. Needless to say, Christmas is a difficult time of year for the habitues of these sites, what with all those inescapable images of mother and child, all those songs and poems about babies in mangers and children nestled all snug in their beds. The yuletide carols and customs, once cozy reminders of more innocent days, now seem like cruel taunts, constant reminders of a secret, aching void.

And so every night I join the other women on the miscarriage and grief bulletin boards at www.inciid.org, the Web site of the International Council on Infertility Information Dissemination. This particular holiday season, another visitor to the boards has made a string of wooden stars to hang on her Christmas tree, and she has asked the other women to send her the names of their children or the dates of the loss; she promises to paint those names or dates on the stars and hang them on her tree. I send her the information, and her kindness gets me through the night. More than a year later, I can't even remember the woman's screen name. I don't even know where she lives. But I do know that, somewhere, every Christmas, this stranger commemorates my sorrow, acknowledging a grief that few people even know about or have chosen to ignore. I get misty-eyed just thinking about it.

I should point out that this is out of character for me. As a onetime staff member of the Globe, I spent a few years writing about Internet culture, chronicling the subcultures and characters who carved out alternative identities on this intriguing new medium. I was an observer who delighted in discovering eccentrics, like the Web satirist who worked naked in his Marina del Rey, California, home or the former programmer who redefined herself as an artist online. But like most reporters, I distanced myself from the subjects I covered. I wrote about people who sought support online, but I didn't seek such help myself. I was a journalist, not a joiner.

Until the miscarriages.

The first was in August 1999, when I was pregnant with twins. After trying to conceive for some time, my husband and I were ecstatic. But nobody told us that I might lose the babies before we saw a heartbeat; somehow, they left that part out. We were totally unprepared for the day when the ultrasound revealed two embryos that didn't make it; the technician left me lying on the exam table, legs propped in the stirrups, while she ran to consult the doctor. The next one was about a year later; this time, I did see the heartbeat, and that little fighter struggled to survive, but, alas, she didn't make it. I had another early loss a few months later.

I returned to the bulletin boards after each miscarriage, desperately seeking comfort in the keystrokes of strangers. Sometimes I would type in a long treatise on grief or anger, and other times I'd just post a simple subject line, like "Why, why, why?" Within hours, sometimes minutes, the replies would appear, ranging from Zenlike advice bestowed by distant philosophers to prayers offered to a God I'm not sure exists to the simple repetition of my name written in brackets - the cyber equivalent of a good, warm hug.

The singular allure of this kind of communication might seem elusive to those who haven't lived through a miscarriage. It isn't, after all, something one talks about in polite society. You take care of the medical problem, and then you're supposed to put on a happy face and cheerfully repeat the axiom "If at first you don't succeed . . ."

You're not supposed to crumble or break down, the way you might after the death of any other loved one, so most women carry the grief internally while trying to go on with their "normal" lives. On the outside, you try to look like a perfectly competent professional, carrying out your job responsibilities, going to the gym, negotiating rush-hour traffic without endangering pedestrians. But on the inside - that's another story. You feel like an overwrought character in a foreign film, wailing and pacing the hallways of some barren castle, unkempt hair flying behind you as a storm rages outside. You feel like a figure in an Edvard Munch painting, face gaunt, eyes crazed, images of blood and death looming in the background. And it gets worse with each miscarriage; simply put, recurring loss robs you of your capacity for joy.

But that's not what the world sees. It usually sees a person who soldiers forward, who politely responds to all the cliches and platitudes offered by well-meaning but clueless folks. The Internet, though, provides an alternative universe, a place where you can be that grieving character who rants and raves or who simply asks for a little TLC. It's a place where, at long last, the silence has been broken, where, for once, you don't feel so terribly alone.


 


Ritz Gonzalez, who had several failed pregnancies before giving birth to her son, Gabriel, found solace online. (Globe Staff Photo / Lane Turner)

Pregnancy loss, in fact, affects at least a million women a year in this country. In 1996, some 983,000 (or 16.5 percent) of the 6.2 million recorded pregnancies ended in miscarriage or stillbirth, according to the most recent figures available from the Centers for Disease Control and Prevention in Atlanta. The American College of Obstetricians and Gynecologists, based in Washington, D.C., contends that one out of every five known pregnancies ends in miscarriage, although some doctors and researchers put the figure as high as one in four.

Miscarriage increases with maternal age, so as more women are postponing childbearing until their 30s and 40s, the number of annual losses is also likely to increase.

Despite the numbers, though, pregnancy loss has historically been unacknowledged in our society for a number of reasons. First, American society in general is particularly optimistic and has long-standing taboos relating to death and unhappy endings, says Linda L. Layne, a professor of anthropology at Rensselaer Polytechnic Institute in Troy, New York, who has written extensively about miscarriage. And until recently, early miscarriages often went undetected, because women simply didn't know they were pregnant; if they did know, they probably had not seen the fetus or told friends and relatives about the expected child. As such, losses were intensely private, although the anguish was still acute for the women suffering the loss. In "Parliament Hill Fields," the poet Sylvia Plath described her early miscarriage this way: "Your absence is inconspicuous/Nobody can tell what I lack."

But in the last 20 years or so, new reproductive technologies and demographic patterns have created a need for a more open and enlightened view of miscarriage. Today, people who are trying to conceive find out about their pregnancies much earlier, thanks to home pregnancy kits and to ultrasounds that enable women to see the fetal sac as early as five weeks into the pregnancy and to detect a heartbeat as early as six or seven weeks. Emotional attachments are formed much earlier these days, as couples begin to invest their hopes and dreams in the expected child and to share their good news with others. Those dreams are shattered when pregnancy loss occurs, yet despite changes in medical technology, there are still no established rituals or ceremonies to memorialize the loss or numb the pain.

"The moment pregnancy loss occurs, the old taboos come back into place," says Layne, whose book Motherhood Lost: A Feminist Account of Pregnancy Loss will be published in October. "Pregnancy is a rite of passage in our culture, and when you complete it, rituals of reincorporation bring you back into the world with a new identity. With pregnancy loss, it's an incomplete rite of passage, and society solves it by trying to pretend that nothing ever happened."

And thus the silence. People just don't know what to say or invariably end up saying the wrong thing. To complicate matters, the debate over abortion keeps some women, including me, from vocalizing their sorrow over early miscarriages, for fear that they could provide ammunition for the antiabortion movement, even though these women feel there is a distinct difference between the unexpected loss of a planned pregnancy and a woman's right to make a choice about an unplanned one.

Not all cultures share this silence. In Japan, for instance, there is a Buddhist deity named Jizo that represents children, both born and unborn. People who have lost a child due to miscarriage, stillbirth, or abortion often conduct a special ceremony and set up little altars with Jizo statues to memorialize their lost children; these statues are commonly seen not only at temples but in private homes and public spaces alike. Pregnancy loss is honored just like any other loss.

But for American women facing pregnancy loss, there are no commonly accepted channels for grief. "Unfortunately, most people determine the length of the sadness or grief by the size of the corpse, and if it's a tiny baby that no one can visualize, they expect people to get over it in a few days," says Cathi Lammert, executive director of Share, a Missouri-based pregnancy loss support and advocacy group.

Women today, then, are caught in a unique historical moment: Technology encourages them to form emotional attachments to their pregnancies, but society has not developed traditions to cushion the shock when those attachments are shattered. That's not to say women have been left in a vacuum; groups like Share and Resolve, an infertility resource group based in Somerville, started offering miscarriage support groups about 25 years ago. The number of such groups nationwide peaked in the late 1980s and early '90s. But even after the advent of self-help groups, many women still encountered a void, and pregnancy loss remains an enduring taboo.

California psychotherapist Kim Kluger-Bell discovered that the hard way when she had two ectopic pregnancies in the early 1990s. Her doctors treated each loss as a life-threatening medical emergency; nobody said anything about the fact that she had just lost a baby. Kluger-Bell is in the business of helping people cope, but when she looked around for comfort, she came up empty. Her colleagues in the mental health field offered little support. There was no body to bury, no life to eulogize.

There were no books in the stores or the libraries, and at the time, the Internet was still an oddity for eggheads and scientists. Eventually, she wrote her own book, a 1998 volume called Unspeakable Losses: Understanding the Experiences of Pregnancy Loss, Miscarriage, and Abortion. But during her own ordeal, the world seemed to minimize her loss, which only made it grow larger in her own psyche. "I was very distressed, yet I felt like I was crazy for being so distressed," she says. "When you are really grief-stricken, and there is no acknowledgement that your grief is appropriate, you start feeling like you are wildly overreacting and there is something wrong with you."


Like Kluger-Bell, I also felt as if there were something wrong with me, because I just couldn't let it go, while my husband, a naturally resilient and upbeat type, bounced back quickly to his lovable, carefree self. Undeniably, men and women handle the issue differently. Women who miscarry undergo the changes in their bodies, including raging hormones and frequently pain. For many, the trauma is psychic as well as physical. Almost all of the women I interviewed for this article said that their husbands or partners wanted to move on after the initial shock; they needed to return to some sense of normalcy and focus on the future rather than the past. But women dwell. We analyze. We need to talk it out. That's what brought me to the bulletin boards in the midnight hours.

I needed a place where I didn't have to hide those dark feelings, where it was OK to be a bit of a basket case. That's not to say I didn't look elsewhere for support. I've always believed in the talking cure, but in this case, I didn't have any luck finding a suitable therapist. I plopped down $200 to see a specialist who spent half the time discussing her own miscarriage and then attempted to compare notes on the local publishing industry. Another therapist insisted on starting with a by-the-book Freudian analysis that seemed painfully cliched - "What do you really think of your father?" - and then proceeded to forget almost everything I told her at another session.

In the long run, it was more satisfying (and cheaper) to seek support online. And what is it that people in this situation are looking for, anyway? Not much. A few kind words. A hug. A sign that someone else has suffered a similar loss and survived.

I'm not one who goes in for Hallmark-style sentiment. But for grieving souls, the messages of unconditional love on these electronic bulletin boards - often written in clumsy yet sincere prose - can read like a Shakespearean sonnet. They are the perfect tonic for a broken heart, and there is nothing more soothing than receiving support from women whose trials have been greater than your own.

Here's an example: In a moment of despair shortly after my third miscarriage, I posted a message titled "How Do You Keep Hope Alive?" A few hours later, a woman wrote back, sharing her story. After many miscarriages, she gave birth to twin girls. Ten days after their birth, one of the girls was diagnosed with a brain tumor; she died at 8 weeks. The other daughter is alive and healthy. After having lived through an unimaginable tragedy, this new mother took the time to offer a total stranger this humble advice: "In my opinion, persistence eventually (usually) pays off, but of course, the struggle to get there is not an easy journey." She signed her note with hugs and prayers. To this day, her courage and generosity make my breath stop.


That kind of unconditional support isn't always readily available in the real world. Just ask Joanne Cacciatore, who became suicidal after she delivered her stillborn daughter, Cheyenne, in an Arizona hospital in 1994. Her doctors were no comfort. No one else knew what to say, or they said the wrong thing: "It wasn't meant to be." "Thank God it wasn't one of your other children." (She has four.) "God has a plan for you."

Those comments just exacerbated her depression. "I would get enraged," Cacciatore, 35, recalls. "You're telling me that God has a plan for me? God planned for me to carry this child for 10 months, to gain 50 pounds, to change what I eat and drink, to spend thousands of dollars, and then I don't even get to have her for a minute? This is God's plan? God did this to me?"

Once she got over her depression, she started the MISS Foundation and its Web site (www.missfoundation.org), a virtual enclave where tears and anger are not only accepted but encouraged. Her relatively modest site receives about 2,000 hits a day, and it is just part of a huge online movement with global reach. The Inciid site, one of the largest and most popular, receives more than 20,000 unique visitors a day, an enormous amount of traffic for a grass-roots organization run entirely by volunteers. And there are hundreds of smaller yet similar Web sites out there, including repositories for poetry and prose as well as online memorials.

As the Internet fills a void, societal attitudes are slowly beginning to change, family by family, doctor by doctor. Theresa Venet Grant, cofounder and president of Inciid, had three miscarriages before she became pregnant with twins seven years ago. She lost one twin very early on, and a few weeks later, she started spotting on Christmas Eve.

She called her doctor to request an ultrasound to make sure the remaining twin was alive. "He said he wouldn't do an ultrasound because it wouldn't change the medical outcome," says Grant. "It was Christmas Eve, and I was thinking, 'Oh, my God, I'm losing another baby.' " It turned out OK; Grant now has a 6-year-old daughter. But the experience made her determined to use the Internet to educate women and to spark more humane medical treatment. "The Internet has changed the way physicians practice medicine," Grant says. "They can't get away with that anymore."


The Internet has sparked changes in the way both doctors and patients approach medical care in general. More and more, patients are researching symptoms and diseases online, and it's common for folks to arrive at a doctor's office armed with stacks of documents. Dr. Joseph Hill, a specialist in infertility and recurring pregnancy loss at the Fertility Center of New England in Reading, reports that 80 percent of his patients are Internet-savvy, and they frequently request tests and treatments - some highly controversial - that they discovered online. On the one hand, patients are empowered by access to information; on the other hand, some of that information can be misleading or outright wrong.

But some doctors say that it's about time that accurate information about pregnancy loss and its psychological effects became available to the general public. Dr. Michael Berman, a New Haven obstetrician and clinical professor at Yale Medical School, has advocated for change since he began his career 30 years ago. As a medical student in the 1970s, he was taught to distance the parents from their baby after it had died. "The mothers were given sedation, and when the baby was born, it was taken away and not shown to the parents," he recalls. "The babies were taken to the morgue and buried at a mass burial site in unmarked graves." That practice stopped long ago, but it is only recently that some hospitals began encouraging parents to hold their stillborn children and take photographs after the birth.

Berman has become something of an online crusader for compassionate care. In 1995, he launched a Web site, www.hygeia.org. It takes its name from the Greek goddess of healing and health, and it features poetry and stories as well as resources and medical information.

But the Internet can also be fraught with danger, particularly for a vulnerable, often desperate patient population. Infertility patients in general are susceptible to online charlatans and schemers. In one notorious case, two sets of parents, one in England and one in the United States, shelled out thousands of dollars to adopt the same set of twins and engaged in a cross-Atlantic battle for custody. In another case, a shady pornographer tried to make a buck by allegedly auctioning models' eggs to infertile couples. After much hoopla in the media, that venture was revealed to be a scam.

"With all the infertility stuff, you are dealing with a very, very vulnerable population that is very susceptible to someone selling snake oil over the Internet," warns Dr. Michael Grodin, professor and director of medical ethics at Boston University School of Medicine. Grodin has one basic rule when it comes to the Net: "Good ethics start with good facts."

But sometimes there just aren't adequate facts. According to the American College of Obstetricians and Gynecologists, at least 50 percent of all recurring miscarriages are unexplained. That fuzzy diagnosis can be frustrating for women desperate to find the root of their problem and willing to do anything for a cure.

There are a few doctors who say they have that cure, and many women find them online. Some doctors contend that recurring miscarriages are caused by problems in the immune system, which can be overcome with expensive drug treatment. Patients can travel great distances and spend thousands of dollars to receive controversial treatments, and when they are successful, they go online and post messages about the miracle doctors and their miracle babies. Some doctors and patients swear that immunology is the root of the problem, while others contend that there are not enough data yet.

The Internet is undeniably changing the way society at large - and medical professionals in particular - view miscarriage. What did patients do before they could turn to the Web? "They said, 'Yes, boss,' and did what they were told," says Dr. Carolyn Salafia, a perinatal pathologist in Larchmont, New York, who is on Inciid's advisory board. "Do I want to go back to that? No."


There is no turning back, not with an army of folks out there using computers to lift the shroud of silence. There are the hand-holders, people who send cyberhugs on bulletin boards and in chat rooms. There are the poets. There are the doctors who disseminate accurate, reliable information - but there is misinformation out there, too. There are also the do-gooders who aim to bring a little tenderness into the real world, too.

The Internet isn't just a breeding ground for TLC. Many women have become politicized and are using the Net as an advocacy tool. Robyn Bear of League City, Texas, started a support Web site after she had six miscarriages. She has since gone on to have a daughter, but last year, she began using her site to lead a campaign to get October 15 declared Pregnancy and Infant Loss Remembrance Day in all 50 states. She recruits volunteers online, and last year, 48 states, including Massachusetts, signed a proclamation. Bear is currently working with Congress to declare a national day of remembrance.

In fact, thanks to the Net, pregnancy loss has become a life-changing event for many folks, rather than something they try to forget and hide from their friends and families. Since they lost a child at 14 weeks into a pregnancy in 1997, Jean and Michael Morrisey of Lexington, for instance, have become tireless crusaders to improve the way hospitals treat women who miscarry. They set up a conference in 1998 to educate caregivers about how to support grieving couples, and they are also actively encouraging the Massachusetts Legislature to pass bills that would help lessen the grief of pregnancy loss. One such bill would ensure that women who suffer a stillbirth receive the same quality of medical care as women who give birth to a healthy child.

Many other women also say their lives have changed indelibly since their losses, even after they have succeeded in having children, one way or the other. Rita Gonzalez has a year-old son, but she still shares her story and offers online support to others who are suffering. Lynne Barberian gave birth to a son last year, but she is still involved with the MISS Foundation. Psychotherapist Kim Kluger-Bell was so moved by her own experience that she changed the focus of her therapy practice and now specializes in pregnancy loss. Donna Cushlanis is pregnant with triplets.

As for me, I return to those bulletin boards every now and then, mostly as a lurker but occasionally offering support to women in the thick of grief. It seems like a long time ago that I posted that question: "How Do You Keep Hope Alive?" Over time, I've learned that hope is other people. Hope is harnessed every day through the strength of women who fight the same demons and weather the same pain. Hope manages to thrive when the silence is broken.

And some stories do have happy endings. In February, I gave birth to twins, a beautiful and healthy son, Aidan, and daughter, Marisa. Someday, I'll tell them about my losses; there will be no silence in my family. But for now, we're reveling in the miracle of life and relearning the meaning of joy.

Patti Hartigan, a former member of the Globe staff, is a writer in Cambridge.

 

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