My Story

Stillbirth Changed My Life

My life changed forever the evening of Friday May 28, 1971. My family’s life changed too. Our third daughter, Janet, was stillborn at 36 weeks of pregnancy. In the recovery room fog of anesthesia after an emergency Caesarean section, I was told my daughter was dead.

I was in the hospital for about a week, missing my two little girls, one-and-a-half and three years of age, and not knowing what to say to my husband, a busy orthopedic surgeon. If it had not been for a fragile looking young woman who hung back by the hospital room door, Janet might not have been named, at least not then. Alternating between feeling numb and feeling intellectually rational I was completely and totally vulnerable to the suggestions and directions of others. A name for my stillborn daughter was needed for a fetal death certificate. Having delivered a stillborn infant who had never taken at least one independent breath, my child was not entitled to a birth certificate. What then had transpired that Friday evening?

Janet was buried four days after her birth, with only her father and clergy present. I was still in the hospital. No one suggested it might be important for me to attend; I was just not capable of asking. Returning home to the ready and empty nursery at least gave me a place I could sit and cry when no one was around. I was furious - furious at the world and everyone and everything in it! I turned on my mother, a new widow of eleven months, and told her to go home. As part of the city skyline, I could not bear to look at the building where my obstetrician had his office. I have no pictures of Janet, no lock of hair, no name bracelet. What I do have is a photocopy of a form from the operating room with her footprints and my thumbprint, and the word “stillborn.” Months later I purchased her name in wooden letters to keep on my bookcase; it stands there today.

For two years I followed the explicit and implicit messages then given to mothers that the death of a stillborn child was something to forget. The most hurtful comment of all was, “You never knew her, so how could you have loved her?” I finally sought professional help. Fortunately for me, I had the good fortune to find someone compassionate and non-dismissive. Our fourth child was born in 1974. At last I was free of the very real phenomenon, “phantom arms.” The long time physical aching in both arms ceased the first time I held my son.

We make choices in grief. Figuratively, if you will, we choose to live or to die. I chose to live. My first determination was that no woman and her family should have my same experience. By September 1979, I had organized and began co-facilitating a support group for women and their partners who had experienced pregnancy loss or infant death. This was the first S.H.A.R.E. (Source of Help in Airing and Resolving Experiences) group in the eastern United States. Three SHARE groups met within two weeks’ time, one in the east, two in the mid-west. Today the organization is known as Share Pregnancy and Infant Loss Support, Inc. In November 1979, in Syracuse, New York where I lived, I organized the first conference in the country on pregnancy loss and fetal/infant death. It was well attended by nurses, no physicians.

I was a woman on a mission. I talked to the newspapers, I interviewed on the radio. I spoke at churches. I spoke to physicians’ groups. I volunteered in-service education programs for hospital nurses. I spoke to any and all audiences who would listen. I studied obituary notices. I called women I had never met. Women I had never met called me. I visited them in their homes. I made hospital visits. Later, I wrote letters to mothers in other states when they corresponded with me, having found the support group and my name in two books that were published in the early 1980s. I was too busy to document what I was doing and what I was hearing. I was driven. I had to make certain no one within my reach would know the pain I knew. Still, I realized I needed more than passion, motivation, and an agenda. I needed stronger academic credentials than my nursing credentials and a Bachelor’s degree. In 1980, I entered graduate school full-time.

Emotional and social support for mothers in three hospitals was studied in my Master’s research (1982). Little difference among physicians’ and nurses’ attitudes, beliefs and actions having to do with fetal/infant death was revealed. However, nurses were perceived as being more supportive than physicians. Health care professionals appeared to be less appreciative of grief and mourning than would have been expected. Pregnancy loss was generally conceived of as a “woman’s problem.”

My investigation hit a nerve. I still have the questionnaires all these years later. No personal comments were requested but I received several in writing from members of my own profession. “Anybody that wants to muck around in this is sick!” “This lady needs a shrink!” One member of a hospital medical staff told me to my face he would never support my efforts. At least he was different than the obstetrician who gave me lip service but then was livid when one of his patients whose twins were stillborn requested I come to the hospital. This was the same mother where the funeral director initially refused to bring her twins back to the hospital so the mother could see them, unless requested by the husband. In those days a dead infant or fetus was subjected to a quick “Hail Mary pass” behind the parents’ backs and out of the hospital as soon as possible. Hospitals offered “to dispose of the remains.” In our case, we were told our daughter “looked normal” but were advised not to see her. We were not capable of responding, bowing to protectionism based on the anxieties of others.

In 1982, equipped with my Master’s degree as a clinical nurse specialist in psychiatric mental health, I opened a private practice devoted to the two populations I believed to be most under served: women and their families, and health care professionals in need of education about pregnancy loss and infant death. Personal reports from parents persistently assured me there was much work to be done.

Thinking of service and education, I took my mission into the Syracuse, NY health care community in another official way. On February 21, 1983, I presented a formal proposal for area-wide comprehensive care for families experiencing negative reproductive outcomes to a Hospital Executive Council representing four hospitals. The panel, composed of men only, turned down the proposal. This proposal was not just an idea but supported with statistics, documentation of need, and supporting letters from some physicians and community members. Where Syracuse could have been a model, this community later had to follow others’ lead.

My doctoral research (1990), in part, looked at gender differences in how women and men understand and give meaning to their experiences with death, particularly fetal/infant death. Fifteen couples participated in the study. The results suggested that the impact of the death event, negative emotions, and the importance of personal choices represented the foundation of this loss experience for these couples. When issues were not shared by the couple, the most distinctive differences for women had to do with issues of time, suffering, purpose of the loss, evaluating their experiences, and understanding. Men included personal involvement and purposefulness when issues were not shared.

In 1987, two nursing colleagues and I opened Family Nursing Associates, the first private group nursing practice in central New York. Providing service to childbearing families, I continued my work in the area of pregnancy loss and infant death. Later, in conjunction with a faculty appointment at Syracuse University, I pressed for death education coursework in the curriculum, which I developed and taught in the university-wide honors program. I initiated other university-associated activities relating to death education. Instrumental in the formation of the Association for Death Education and Counseling’s Greater Upstate New York chapter, I served as its president until moving to South Carolina in 1996.

Like so many others, I was birthed into the field of thanatology by personal experience. In retrospect, part of what I have wanted to see change has happened. Still, interactions between bereaved parents, family members, friends, and professionals indicate that fetal/infant death remains significantly disenfranchised. Inconsistent care continues to be the norm. It seems that the more things change, the more they stay the same. However, at a medical reunion I attended with my husband in Syracuse, NY in 2005, one older male physician initiated conversation with me, regrettably recalling my proposal’s rejection by the Hospital Executive Council in 1983, “That group of men was wrong.” Later that evening another physician, a much younger obstetrician, whom I had never met, approached me to report a recent conversation with his colleagues. What he thought I needed to hear from their conversation about the history of caring for those who experience fetal/infant death he said could be summed up in only four words, “Lois Sugarman was right.”

My daughter did not die in vain.

With me, she still lives. This poem was written on June 11, 1981. However, I always felt I did not write it but, rather, recorded it. It was on the page in mere minutes. I have never edited it.

JANET LIVES.......WITH ME

Janet - Is with me when I wake.
She is with me when I sleep.
She is with me when I don't think about her;
She is with me when I weep.
Janet - She is with me with the others.
She is with me when I'm alone.
She is with me when I talk with mothers
Who walk this road I've known.
Janet - I always think about her
Even when I don't.
She'd be partly grown up by now;
I wonder how she'd look.
A little bit like Helen?
A whole lot like Diane?
Maybe like Jack, her brother, who sometimes
Says her name.
Janet - Her dad, he still thinks about her
And loves her still the same.

Janet - Is my work;
Especially here she lives.
No one else got to know her,
Because Janet's dead, you see.
Janet - You are the voice of every other mother and every
Other dad.
Each one in turn, especially when they're sad.
Janet - You've helped erase the hurt for others a thousand
Times or more.
You gave my life direction
Like nothing did before.
Janet - Ten years later, you are helping to see the work
Get done,
Those things that make a difference
To those who must do the living.
This is our way of giving;
This is your way to be.
This is how Janet lives.......with me.

If you have lost a baby due to a miscarriage or death, call me in the US at 919-562-7905 for a 15-minute free consultation or e-mail me at laux5737@centurylink.net to schedule an appointment.

Lois Sugarman, Ph.D. provides therapy services for people experiencing a number of problems including loss and grief, anxiety, trauma, abuse, fears and phobias. She has a special interest in providing therapy services to those who have experienced pregnancy loss or the death of a baby. In addition, she also utilizes Thought Field Therapy for those wishing to improve their performance in academics, business or sports. She provides her therapy services over the telephone to people all over the world. She resides in Wake Forest, near Raleigh, North Carolina.