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A Helping HAND: Support Group Comforts Parents After Neonatal Death

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Written by Tara Leonard

Healthy Living

SOQUEL (January, 2011) - Imagine that for three, six or nine months you’ve prepared for your baby’s arrival. You’ve counted the days, painted the nursery, and giggled at prospective names. You’ve relished the smiles of expectant grandparents and welcomed the good wishes of friends and family members. Then the unimaginable happens – a miscarriage, stillbirth or neonatal death. Instead of a bundle of joy, you leave the hospital with bottomless grief, unanswered questions and empty arms.
HAND of Santa Cruz is a support group for parents who have experienced this devastating loss. HAND stands for Helping After Neonatal Death and for many parents it becomes a critical source of solace, a place where they find both acceptance of their enduring pain and the strength to move forward.  
“People are very uncomfortable with this type of loss,” said Kristie Shulman, Coordinator of the Santa Cruz Chapter of HAND. “It’s sort of a taboo subject. The loss isn’t tangible for other people because they never saw the baby. Unless they have gone through it themselves, most people just don’t get it.”
According to Shulman, parents who have had a pregnancy loss don’t fit in with other grief support groups because it’s very different from losing an older child. “You don’t have all the memories or experiences those parents do,” she explained. “You never got to know who this little person even was.”
Founded by a bereaved parent in Marin County in 1979, HAND has chapters throughout the bay area. They offer monthly support meetings, a 24-hour telephone crisis line, in-service trainings for health care providers, a quarterly newsletter, and liaisons to other resources and organizations. Support group leaders are volunteer parents, not professional counselors, and the sessions are free and confidential. All bereaved parents, their family members, and friends are welcome to attend.
During a recent meeting, a half-dozen women sat around a conference table at a Soquel church sharing stories, hugs, and a box of tissue. One by one they talked about a sudden loss of fetal movement, the “nagging feeling that something was wrong,” or the ultrasound technicians who couldn’t find a heartbeat. One mother spoke about the shock of having to deliver her already deceased son at 24 weeks gestation. Another expressed frustration at the unanswered questions surrounding the death of her full-term daughter.  “How could this happen?” she asked. “I did everything right!”
This was a “subsequent pregnancy” meeting, held for those who have started or are thinking about starting another pregnancy. Many of these parents are still dealing with the heartache of a previous loss, making pregnancy a joyful but terrifying experience. One woman attended with both her mother and her infant daughter, swaddled in a soft, pink blanket. After two early miscarriages, she lost a son at 34 weeks gestation, then quickly became pregnant again. Looking back, she realized that she suppressed her grief, focusing instead on maintaining a healthy pregnancy. It wasn’t until after the safe arrival of her daughter that she started having flashbacks, waves of anguish that leave her shaken and exhausted.
She shook her head at the hurtful comments well-meaning people made, such as “It was probably for the best,” or “At least you didn’t get attached.” Another woman added that she dreads being asked how many children she has. “In my heart I know I’m actually the mother of three,” she said. “I gave birth to this baby. I have pictures of him. He was real. But people have forgotten.”
Unfortunately, such stories are not as rare as you might think. According to the American College of Obstetricians and Gynecologists, miscarriages (fetal death before 20 weeks of pregnancy) occur in about 15 to 20 percent of pregnancies, while 1 out of 160 deliveries in the U.S. end in stillbirth. Yet our culture has no accepted traditions for mourning the loss of an unborn child or newborn, leaving parents to grieve in isolation.
“We felt like we were the only ones in the world that it had happened to,” said Shulman whose son died in 1995 due to an umbilical cord accident. Her positive experiences with HAND motivated her to take over the Santa Cruz chapter in 1999.
“It’s amazing how many people have had losses, but nobody talks about it,” she said. “It was so helpful for me to go to meetings. There was a woman there who had almost the same thing happen four months prior and it was good for me to see where she was in her grief process and know that I wasn’t always going to be stuck in a dark hole. Now, through my own experience, I’m able to help other people and give them hope.”
The ensuing years have also brought new options for parents who have lost a child before, during, or just after birth. The internet provides easy, at-home access to information and support, gradually chipping away at the cultural code of silence. But, while on-line support groups can be helpful, nothing is quite the same as a face-to-face connection.
“You don’t even have to explain it, they just know,” said a bereaved father who has been attending HAND meetings for nine months, ever since the loss of his daughter at five months gestation. “You hear other people’s stories and know that you’re not alone. You end up with a lighter weight on your back.”
As the meeting drew to a close, the women gathered their belongings and hugged one another good-bye. They drifted out into the night, taking their sorrow with them, but also the comfort of having been heard and acknowledged. For a few brief hours, they could say their deceased child’s name out loud and wonder about the family that might have been. They could drop their brave faces and share words of gratitude for their healthy children and tears for those they lost.
“You don’t get over it,” one woman said. “You integrate the experience into your everyday life. I don’t have to forget about him. I can live with that and be okay.”
For more information contact Kristie Shulman at (831) 438-4513.