February 8, 2019 | By Margaret Martin | General
In 1975, my 13 ½ month old son Michael died due to complications caused by a progressive neuromuscular disease, Infantile Spinomuscular Atrophy (SMA). We were devastated, our world was rocked, I would never be the same person. I felt the need to talk to another parent who had survived (literally) this loss. As I searched around, checking with my network of friends, fellow social workers and mental health colleagues, I found nothing. This was in the “old days” before the proliferation of support groups (essentially AA was it), in the time when guided by a benevolent paternalistic intention, parents were advised to forget the tragedy that had occurred and go on with their lives, “Have another baby”. Keepsakes were discouraged in the misguided notion that they would cause hurt to the grieving parents. Moms were focused on; dads and siblings were left out, told to take care of Mom. Bereaved Parent the first of a wealth of self-help books for grieving parents had not yet been written.
As I painfully and numbly made my way through my grief I found myself pregnant again and crossed paths with a woman who had been in a group for parents of medically fragile children I had led as a social worker at Regional Center for the Developmentally Disabled. I had been pregnant at the time of the group, and she asked the inevitable question (in the days before sonograms),” What did you have?”. I told her what had happened, and she shared that her son also had died. She grabbed my arms and, looking into my eyes, said that I had to tell “them”, that “they” would listen to me. In my confusion she explained that I knew what it was like to be a parent whose child had died, and I had the credentials to communicate with the medical community. I was stunned; I was in need, not able to imagine helping others, but her words stayed in my mind. In 1978, I taught a course through UCSD Department of Psychiatry extension program for health professionals working with bereaved parents and for several years served as a preceptor in the UCSD Medical School Family Practice Residency Program.
A few years later I received a call from a woman, Jo Howard, whose daughter had been born still. She had seen a Phil Donohue Show on Healing Hearts, a support group for bereaved parents in Lancing, Michigan. She described the urge to “jump into the TV” and her desire to start such a group in San Diego. In her search, her childbirth coach told her about me. Jo had lots of energy and time; I had professional contacts, and I contacted another bereaved friend whose infant son had died of a heart defect Hypoplastic Left Heart Syndrome, Ann Nickel, with talent in fund raising and marketing. Together, the three of us started the support group Empty Cradle. We researched the few existing groups in the country (before the days of the internet) and distilled and combined all the features we believed would offer personal, individualized, and comprehensive support services to bereaved parents. In 1981 Empty Cradle was born.
We sought initially to find parents for whom the loss had occurred sometime before who would be interested in being trained as “resource parents” to form our service core. Ann placed an article in the Union Tribune and found a meeting place at the Fletcher Hills Presbyterian Church. We put on the coffee and held our breaths. The room was filled to overflowing with mostly women who had shared the same loss, the death of a baby due to miscarriage, stillbirth, or infant death. Women came for whom the loss was more than 20 years, others were sitting on “donuts” just out of the hospital following a stillbirth. Parents shared stories of being advised by their families not to come, cautioned that talking about dead babies was morbid and would hurt them even more. In their need to share with others who had suffered a similar loss, they came.
Empty Cradle provides a number of services and resources for bereaved parents and the community. Monthly support group meetings are held at which couples listen to a presentation, visit informally with each other, and then meet in small sharing circles, including a subsequent pregnancy circle. A lending library offers books and materials to be checked out. A bimonthly newsletter offers a forum for sharing thoughts and feelings, information, announcements of new births, and a place to remember. A quilt joins together images to remember the babies who died. Members are available to talk to community groups, health care professionals, and anyone else who wants to understand how to help grieving parents.
Now, in contrast to when my son died, Empty Cradle supports families and helps build memories to comfort the grieving heart. Empty Cradle is a non-profit organization funded by donations and carried on through the contributions of time and talent of volunteers.