sharing your stories and remembering your children
By: Linda Tibbitts EPLA Board Member
Four years ago, I was preparing to order dinner at local restaurant when my cell phone rang. I was excited to talk to my daughter. I knew that she and her husband had a 12 week visit with the OB. She had decided that once they knew everything was okay at this visit, we could tell others about her pregnancy. My husband and I were eager to tell friends that we were going to be grandparents.
I answered the phone and from the weight of her voice knew something was wrong. “No heartbeat?” I left the restaurant shaking in disbelief. “Are they sure?” From here some of the details are hazy. I remember at some point learning that she had a ‘missed miscarriage’, meaning the baby had died at 7 weeks in utero but her body had not yet delivered the remains.
My heart wrenched. I was a grandma that would not meet my grandchild in this life. Now I would be telling my closest friends about the loss, knowing that many would respond with “But I didn’t even know she was pregnant!”.
As I bumbled through my own feelings and tried to find the right words to say to my daughter, I remembered the physical and emotional pain of my own miscarriage thirty years earlier. My greatest hope was that her journey would be filled with more information, more compassion, and more hope than mine had been. As I struggled for those first words, I sputtered “Let yourself grieve.”
Thirty years ago, my husband and I had experienced an early miscarriage. I recall the shock of realizing I was bleeding. I remember feeling dismay when we learned that this bleeding was in fact the beginning of a miscarriage.
While our doctor was willing to talk with us about next medically necessary steps, no one coached us on the emotional and physical pain that often accompany miscarriage. One well-meaning family member assured me that there were “worse things in life”. She tried to console me by telling me that “I wasn’t really grieving. I was merely disappointed.” Others told me that I was young and could easily get pregnant again and fulfill my dream of being a mother.
All of these well-intended condolences left me empty and confused. My grief was compounded by guilt and fear. I felt guilty as I wondered if I had done something to cause my baby’s demise. I was fearful that I might never carry a baby to a live birth.
My doctor’s only words of ‘comfort’ were that after three miscarriages he would begin testing to determine a cause. When I told him that I didn’t think I could get through three miscarriages. He assured me that I didn’t know what I could tolerate.
Since this experience was pre-internet, very little information was available. I walked downtown to the community library and searched the shelves of medical books trying to find any information I could about what we were enduring. I found one book that gave miscarriage statistics and was surprised to learn that approximately 20% of pregnancies end in miscarriage. I wondered how something so common could be so hush-hush.
So now as I heard my daughter’s painful words, I naively thought her experience would be different than mine. I assumed that there would be information packets given at the hospital much like people receive when they have a difficult medical condition. I imagined that in a society where people openly talk about difficult subjects, there would be available avenues for emotional support. I hoped that medical testing would give them answers they needed to reduce the guilt and fear.
Unfortunately, at that time, very little had changed from our experience thirty years prior. My daughter and her husband were faced with making decisions about next steps with very little information. They were assured that the hospital would take care of their ‘product of conception’ as ‘medical waste’. They were given little insight into the emotional and physical pain they might be facing. And testing is still often not administered until a woman experiences three miscarriages.
After my daughter had her second miscarriage experiencing similar gaps in care, she began articulating how she wanted to be part of changing the social script around early pregnancy loss. After conducting a series of focus groups and hearing the painful, lonely stories of numerous women and couples, she formed the Early Pregnancy Loss Association.
As a board member, I have had the opportunity to network with other organizations and professionals that share a similar mission. I see a movement focusing on changing the climate that surrounds early loss.
More hospitals, OB offices, crisis pregnancy centers, and non-profit agencies are recognizing and providing for the loss community. More people are openly sharing their loss stories. As this movement gains momentum, I have genuine hope for a world in which no family has to suffer miscarriage alone.