The impact of pediatric and infant loss
My firstborn son was born with a birth defect and lived for only 19 days. His life and death changed everything in my life. He never came home. I never fed him. I never held him until the night he died in my arms. During his short life, he was medically paralyzed and sedated as part of his care. Somehow that made seeing him in that tiny casket a little easier – he didn’t move in life, so the stillness was familiar. I remember how the hastily purchased dress I wore to his funeral so closely matched the carpet at the funeral home. I remember how the front of my dress was damp with breastmilk leaking from my body like tears the whole time.
For days and weeks afterward, I remember seeing people who remembered me being pregnant, and they would ask about the baby. The well-intentioned cashier at the grocery store, train conductor, mailman, pharmacy staff, coworkers, telemarketers and insurance companies. I had to say “I had a boy, but he died after 19 days” over and over. I watched as their faces changed from “what did you have?” to “why did I ask.” My empty arms felt made of lead, my heart hurt, my stomach soured and the tears would not be stopped. Whenever I left home, I had to be prepared – people love baby stories. Someone would always ask, and I would answer and rush home to close the door.
The nurses, doctors and all the other people who care for these families understand all of this. Advocate Aurora Health team members use the Bereavement CARE Model (Comfort, Acknowledge, Respect and Experience) as the standard of care when a baby dies at our hospitals. This ensures every family experiencing an infant death receives Comfort and compassion, Acknowledgment of the devastation and trauma they are going through, Respect for families’ decisions inclusive of their culture and customs and all of this creates a unique Experience that will be remembered for a lifetime.
“We have the opportunity through our bereavement standards of care to provide amazing care to the parents, grandparents and others involved in their support team,” says Geanette Barry, perinatal support coordinator at Advocate Christ Medical Center in Oak Lawn Ill. “We do this by providing comfort through memory making, recognizing the continued need for ongoing support and providing resources, presenting the families with options to allow them to make informed decisions, and providing compassionate care that allows the family to protect, nurture and socialize their baby,” she says.
Care like this encourages families to create a unique experience that meets their needs.
President Reagan designated October as a time to acknowledge pregnancy and infant loss in 1988. October 15 is a day specifically set aside for these memories.
“On October 15, at 7 p.m., all across the globe, bereaved families light a candle in honor of their precious little ones gone too soon to create a wave of light. In the past years, as a system, we would place lit LED candles in different areas/units around the hospital to promote awareness of perinatal and infant loss,” explains Barry.
On October 15, I invite you to light a candle at 7 p.m. and remember the babies and children who died too soon. If you have experienced the death of a baby; tell your story, say your baby’s name and perform an act of kindness in your baby’s name.
No one wants to be a part of this exclusive club because the cost is so high, but 1 in 4 women you know have paid that price. If you know someone who has experienced the death of a child at any age, acknowledge it this month. Say their child’s name – and yes, they may cry. You didn’t make them cry; you gave them permission to cry. My son was born 26 years ago, and my memories of his short life are vividly remembered and cherished in my soul. Would you like to hear about him?
Linda Kojich is a clinical informatics nurse at Advocate Medical Group.
About the Author
Linda Kojich BSN, RN, NPD-BC is a clinical informatics nurse at Advocate Medical Group.