Including consolation and information in the medical response

LOST PREGNANCY

By Joanne Kabak
Joanne Kabak is a freelance writer.

March 18, 2003

When Yvonne Varghese had a miscarriage 16 weeks into her pregnancy, there was a specific medical response to help her body recover. She had a D & C, short for dilation and curettage, a procedure that removes tissue remaining in the uterus after the pregnancy. But the lack of emotional support was far less healing. Instead of comfort, she kept hearing messages like, "Forget about it and try again."

Varghese said she couldn't forget. "I was in terrible shock," she said. "Yet I felt like I had to pretend it never happened." She did try again, but she also lost her second pregnancy last year, at 20 weeks. This time, although the experience was no less painful, she was able to cope in a different way.

"I had people who cared," she said, including a new doctor who stayed by her and a hospital social worker who gave her information on support groups. This gave her confidence to acknowledge her loss by holding her child, naming her Sharon and saying goodbye in a funeral service.

"I realized I had so much pain the last time because I had no closure," said Varghese, a Farmingville resident. "So few people understood what I was going through."

Nearly 1 million women a year experience a loss during pregnancy, called a miscarriage up to 20 weeks and a stillbirth after that. Although it's considered a common occurrence, many women say the level of public awareness and the options for private grief are sorely inadequate. Instead of comfort and information, what they often find is a lack of resources to support them, nagging medical questions about what happened, and confusion from family and friends, who often say the wrong thing or, perhaps worse, nothing at all.

"It's crazy-making to have an important life experience that people around you don't recognize," said Linda L. Layne, a professor of anthropology at Rensselaer Polytechnic Institute in upstate Troy, and the author of "Motherhood Lost: A Feminist Account of Pregnancy Loss in America" (Routledge).

Thanks to advances in research on the medical issues and better understanding of the psychological impact, many professionals and laypeople say it's time to change at least some of the ways we deal with pregnancy loss. For starters, "there's no place for a caregiver who's not compassionate," said Dr. Jonathan Scher, an assistant professor at Mount Sinai School of Medicine in Manhattan and author of "Preventing Miscarriage: The Good News" (HarperCollins). "You've got to be very sympathetic and not dismiss a woman with, 'Don't worry, it's going to improve next time.'"

Further, he said, couples should not have to wait until a third consecutive miscarriage to begin testing for the causes, which is still standard practice in many offices. "That's very cruel," said Scher, an OB-GYN who specializes in miscarriage in his Manhattan practice. "If you miscarry a second time, we investigate it." Much work still needs to be done on knowing the rate of recurrent pregnancy losses, but he estimates that after one miscarriage, the chance of a second is about 13 percent. After two losses, the chance of a third consecutive loss rises to about 20 to 25 percent.

Earlier testing may help identify causes that are known to be treatable. For example, Scher cited the case of a woman who had three miscarriages between 16 and 18 weeks before she was tested. As a result of those tests, it was learned that she had a weak cervix, a well-understood risk for miscarriage that is fixed "with a stitch," Scher said, "a treatment that is more than 90 percent successful."

When it comes to the mind-set for making medical choices after pregnancy loss, "you have to be your own advocate and be knowledgeable," said Mary Hinton a Manhattan resident. After her second miscarriage, she found it "intolerable" to wait to see if she had a third before finding out what was going on. Instead, she insisted on tests, and later gave birth to two children. Her experiences were so life-altering that she decided to use her expertise in organization to establish The Glimmer Fund, a nonprofit foundation, "to give women a glimmer of hope after miscarriage."

Its first event is April 8 at Tavern on the Green, honoring Magee Hickey, a New York City newscaster who has brought awareness to the subject of miscarriage by publicly discussing her own recurrent losses. Hinton said that the 2-year-old Glimmer Fund has given grants for Spanish-language materials and for training bereavement counselors, and she hopes to funnel more money for community-based support groups, which often lack enough financial backing.

After going through four miscarriages, Martha Weiss of Farmingdale helped to start one such group, called Guardian Angel Perinatal Support Group, one of only a few in the area that are held outside of a hospital and that meet every month. She said it is open to anyone who has suffered a loss from early miscarriage to early infancy. The group meets at Molloy College with the support of the Diocese of Rockville Centre and of SHARE, a nationwide perinatal loss outreach group.

"I knew what was needed and followed my heart," said Weiss, who has eight children. While there are many factors that influence the experience of a loss, "the grief is very similar. It's the loss of dreams, of hopes."

One of the differences between early losses and later ones is that at more advanced stages of pregnancy, the developing fetus has taken on a real presence in the external world, thanks to information like sonogram photographs and gender identification. At that stage, many couples say that healing is helped by acknowledging their baby's existence through naming and creating memorials, even if it doesn't always make people around them comfortable.

Last year, when Linda Carrozzo of Seaford found out her baby, Nicholas, had no heartbeat one week before his due date, she said she was in that nightmare zone "where you literally experience life and death at the same time." His umbilical cord had become compressed, and despite a "textbook" pregnancy after eight years of trying to get pregnant and fertility treatments, Carrozzo had to deliver a baby who was no longer alive. "It felt like a limb had been torn from my body," she said. "By 10:30 that morning I was on my way home to an empty nursery, with only my son's footprints, ID bracelet, and a Polaroid picture."

Some women don't have even those remembrances, she said. As New York director of the National Stillbirth Society, she is reaching out to help others, even as she deals with her own stress. Of the approximately 26,000 stillbirths annually, about 2,000 are in New York State, Carrozzo said. One of the society's goals is recognition of a stillbirth through a form of birth certificate. Carrozzo is working with Assemb. David G. McDonough (R-Merrick), to encourage passage of a "Missing Angels" bill in New York. "This birth certificate is more than a piece of paper," she said. "It is proof that our children existed."

Having concrete reminders of the baby is becoming increasingly accepted, said Virginia Coletti, a nurse practitioner in psychiatry who coordinates the perinatal, neonatal and infant bereavement groups at Stony Brook University Hospital. The ongoing groups meet every other week and are open to anyone who has had a loss.

"Memorializing the loss allows you to grieve," she said. For example, Stony Brook has established a memorial garden that provides grieving families with a quiet place to mourn and the opportunity to add a brick engraved with their child's name or other words. Further, she said, "every single nurse in the labor and delivery room receives bereavement training." Even in the case of early losses, when pictures or footprints are not an option, Coletti said it's important for parents to have "something to go home with," and the hospital gives them a small handmade quilt of about 12 inches.

Among the most difficult times for a couple experiencing a loss can be the moment they find out. It often happens suddenly and requires them to make on-the-spot medical decisions. When a sonogram at 25 weeks showed that her baby had no heartbeat, Pat Kelly of Rockville Centre said her doctor was already handing her the address to go to for a D & E (dilation and evacuation) even as her husband was trying to find out what that meant. She felt she would rather have induced labor and gone through the birth process, but she said her doctor told her abruptly that "I'd just be taking up hospital space and wasting her time."

GETTING HELP

Support Groups

Guardian Angel Perinatal Support Group (GAPS): Martha Weiss, 516-249-8589

Circle of Caring, Stony Brook University Hospital: Virginia Coletti, 631-444-3281

Schneider Children's Hospital, North Shore-Long Island Jewish Health System: Mona Bokat, 718-470-3443

Good Shepherd Hospice: Nassau, Clarice Curry, 516-876-8485;

Suffolk, Jane Malone, 631-376-3850

Winthrop-University Hospital: Welcome Center: 866-WINTHROP

North Shore University Hospital, Manhasset: Nancy Berlow, 516-562-8422

Our Lady Queen of Martyrs, Centerport: Marilyn Bork Hard, 631-754-9045

Lost Miracles Support Group, St. Adalbert parish, Elmhurst: Eileen Pesek, 718-429-2005

Organizations

The Glimmer Fund: www.theglimmerfund.org, 646-548-3399

SHARE: www.nationalshareoffice.com, 800-821-6819