Perinatal loss involves the loss of an infant through miscarriage, ectopic pregnancy, or stillbirth. Any one of these cases unexpectedly places parents in a state of bereavement. In the past, parents were often not allowed a time to experience grief. With the support of healthcare providers, this philosophy is changing and families are beginning to get the support they need to address the loss of their child.
Not so long ago, parents were discouraged from even viewing or being with their deceased infant. In society’s attempt to get back to “normal” the entire pregnancy, stillbirth or miscarriage would somehow be brushed over in conversation. Comments like “the baby was never really part of the family,” or “you’re lucky you didn’t really know the child” were meant to help the parents get over the loss. But in reality, parents were often left with guilt feelings like, “How could I have prevented this?” or “What did I do wrong?”
Obstetric nurses and caregivers have the great privilege of experiencing the joy and excitement families feel when a new life comes into the world. Unfortunately, not every delivery has a positive outcome. When the joy of birth is unexpectedly gone, caregivers also should be there to help the family process the loss and recover. That is the mission and vision undertaken by one medical center group.
In an evolution of caring for patients and families going through perinatal loss, the Mother/Baby Unit at Carilion New River Valley Medical Center (CNRV) near Radford, Virginia, began a nurturing support and resource support program for families with a focus on the long-term health and wellbeing of mothers.
Our ministry began in 1989 when Vi Gaylean, LPN, expressed her concern about the lack of perinatal grief support to the director of the CNRV mother/baby unit, Cleo Williams, RNC. Together they sought resources for education about perinatal loss.
They were not alone. In other areas of the country, training sessions for support counselors were beginning. Literature for counselors and for grieving parents was being developed where in the past there was none.
Williams was the first person from CNRV to attend a perinatal grief counselor training conference. On her return, she and Gaylean joined forces with other nurses who also felt the need to make a change in the way fetal loss was handled on a personal and professional level.
“We wanted to do more,” said Williams. “We wanted to make a difference.” With those thoughts, the five-member grief support group created a rich and rewarding Perinatal Loss Program that preserves as many memories for the parents as possible and helps them through the grief process. No longer would their lost children be forgotten.
One of the first gestures the group initiated was a small wreath of blue forget-me-nots placed on the patient’s door to remind the healthcare staff, laboratory and food service personnel that this family has suffered a loss.
A brochure was developed for the patient that explains the support resources available. A member of the grief support group goes over this with the patient at an appropriate time.
Mothers are offered the opportunity to transfer to another unit. Some stay in the birthing unit in honor of being a mother, others choose to leave the sights and sounds of the unit. The staff respects both decisions.
The steps ahead are often unsteady. The arrangements to be made can be overwhelming for any family. The mother/baby staff nurse will talk with the patient and family, offering support and assistance in notifying clergy, funeral homes and others designated by the family. For very small infants, burial cradles are supplied by the hospital as needed. Some funeral homes and cemeteries in our town provide free burial services.
Mothers sometimes state their desire to “write everything down” so they don’t forget their experience. The staff recognizes this need and provides a special memory book. Journaling is encouraged for the days and weeks that lie ahead. In six months, reflecting back, the mother will see how far she has come in the grief process.
As word of the grief support program spread into the community, a grandmother expressed her wishes to make small quilts in memory of her grandchildren who died. A nurse, Sally Simpkins, volunteered her sewing talents making white eyelet memory cases, smocked gowns of all sizes and blankets for the deceased infants and families.
A baby ring is tied to a tiny heart shaped pillow and given to all mothers.
Special photos of the infant are taken. Often the smocked gown, blanket and ring pillow are used for these pictures. For the infant photo an entire roll is used. The staff works with the developer to protect the family’s privacy. When the photos are ready, they are placed in a small album for the parents. Parents may take the album home, or if they may not wish to have them at this time, CNRV mother/baby unit keeps the album on file.
Other items offered to grieving mothers include, baby bonnets lovingly hand-stitched by Virginia Absher, the 85 year-old mother of a staff member; a foot print card; a lock of hair (if possible); a certificate of blessing and a hand written sympathy note from the nurse caring for the patient.
The caring support of the CNRV Mother/Baby Unit does not stop when the grieving family leaves the medical center. Support group meetings are held monthly by trained grief support counselors. Literature, seminars and conferences for parents of infant loss are available. Follow-up calls are also made to the family during the year. And each spring and winter the staff holds memorial services for the families to offer opportunities for remembrance.
A mother never forgets, says Rhonda Lindamood, RN II, grief support counselor. Her life will go on, she notes, but she always carries thoughts of the small one that never was. “For two years a mother came to our support group with photos of her infant daughter. One night she was in turmoil, needing reassurance that she was really a mother even if her infant daughter was only 28 weeks along in the gestation period. Were her feelings valid? I gave her that assurance. She left relieved of her anguish and sorrow. I heard from her again around the infant’s birthday, she was making sure we still met on Thursdays. I thought I’d see her. She didn’t show … but I think she just needed a connection, she needed to know we were still here, that we still cared.”
In March, 2003, a conference “Sharing With Care…A Recipe for Comfort and Support,” was organized by Lindamood and Williams in an effort to increase knowledge of available support for perinatal loss. Invitations were extended throughout the region to area clergy, caregivers, and persons who offer support to families during this time of sorrow. Speakers included nurses, support counselors, clergy, and physicians … offering a positive presentation of how care may be enhanced and continuous. The conference was offered as the group’s first Sharing Day and they plan to repeat it annually.
From this one caring group of nurses, the Perinatal Loss Program has spread throughout the Carilion Health System, which serves nearly 2 million people in 10 counties of southwest Virginia. If you would like more information on this program, contact Cleo Williams, CNRV women’s services director, at 540-731-2251.
This article first appeared in Theology Matters, Vol. 9, No. 3 (May/Jun 2003).
