24 November 2013

Testimony to the Washington State House Health Care & Wellness Committee on Friday, November 22, 2013, 1:30 p.m.

Working Session: Birth Defects, Premature Birth, and Stillbirth.

Testimony on TVW in the Archives. 

Madam Chair and members of the committee, Thank you for allowing me to speak today as a mother and a MISS Foundation Facilitator about how stillbirth has affected so many of our lives. I flew over from Spokane, Washington solely for this working session. The MISS Foundation is an international organization dedicated to providing support and advocacy for families after the death of a child from any cause.

Ten years ago, I was eight months pregnant with my third child when I didn't feel her moving. My worst fears were confirmed a few hours later.
My daughter Grace died on May 29, 2003.
She was born on June 1, 2003.
After my daughter died, I experienced a level of trauma that I was unprepared for: loneliness and isolation, prolonged depression, PTSD, disenfranchisement from my family and friends, marital problems, problems at work, prolonged health issues, financial difficulties and the list goes on.
I was required to file a death certificate, but I was not given a birth certificate. To say Grace died but was never born was a contradiction around which I could not wrap my mind or heart.
When I was five years old, my father died of cancer. I am here today in part because we never spoke about his death when I was growing up. The affect of that silence has been palpable on my life. Ten minutes after I found out Grace died, I turned to my husband and said, “Her life cannot remain silent. Something good must come from all of this.”
Two days after Grace was born, my grandmother, 91 years old at the time, called me and said, “My first child, a son, was stillborn in 1934. I never forgot him though I felt I could never speak about him. I didn’t even get to go to his funeral. You will never forget her.”
While some things about stillbirth have changed in those 70 plus years since my own grandmother delivered her son, there is much to do around this often-taboo topic. So much so that the prestigious medical journal the Lancet dedicated an entire series to stillbirth, putting out a public health warning and a call for more research and improved public policies which support grieving parents.
My 16-year-old son, Carver, who has worked with Rep. Riccelli in the the YMCA youth legislator recently wrote a reflective essay for an English assignment. Reflecting on the time when he was five years old, he wrote: “The toll this event took on my parents is at a level I hope I won’t ever fully understand. When they didn’t think I could hear them, they would take off their masks and be sad and cry and even yell. I could sense a heavy sheet, stitched with iron that had drifted down to enfold our household, and the walls slowly beginning to crack.” I hope you will take time to read the essay in full. It is a reflection on how this affects so many families in Washington State and in particular our own.
One in 110 births in this country result in stillbirth—10 times more common than SIDS, yet SIDS is a continual public health conversation while stillbirth struggles to find space among policy makers, clinicians and society in general.
I facilitate a support group in Eastern Washington through the MISS Foundation for bereaved parents. A new mother recently shared her story: When her son Michael was stillborn, she immediately asked the doctor if it was a cord accident because she’d had a dream about that during her pregnancy. He said no, definitely not. However, when she received her son’s death certificate, despite the coroner’s finding of no cause of death, the doctor listed cord accident as cause of death. When she investigated this further, she discovered that the doctor didn’t want to list unknown. The impact of these words on her son’s death certificate has been traumatic for the parents. And the fact that their trauma is increased by a professional who should have known better is unconscionable.
We need to continue to explore policy changes, education, research and advocacy to give voice to our grief that is often misunderstood and marginalized.
My daughter was born dead, but her voice rises up inside of me and deserves to be heard on behalf of our family and on behalf of all the infants born too soon and too still.
Thank you. 

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