The impact of pediatric and infant loss

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.

Find bereavement and grief support in Illinois and in Wisconsin.

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  1. Dear Linda,
    I remember you and your angel JJ like it was yesterday. I hope that all who read this take advantage of grief counseling. I myself could not imagine how it would be to lose a child but I did live this thru you.
    I love you ❤

  2. Thank you, Linda, for sharing your story.
    I very recently had a loss and received AAH’s bereavement CARE first hand and I have never felt so taken care of before. The care before, during, and afterwards will continue to remain with me forever. Although my baby’s life was very short, the care we both received was truly exceptional. Things happened so quickly that my husband and I didn’t have time to think or prepare for our situation. A memory box was made and delivered to us at the funeral and it meant so much to us to have something of our baby. THANK YOU to the L&D team at ABMC.

  3. 22 years ago, I delivered a still born son and there was not much acknowledgement of the loss or any grief counseling offered. Things are definitely different now. This last December, my daughter delivered her first child, my first grandchild, my mother’s first great grandchild, Aaron who we knew would be stillborn. We were at AWAMC and I was there the whole time with my daughter while she labored and delivered Aaron. I can say firsthand that the level of care and compassion she received; during labor – knowing she would not be taking her son home with her. After delivery – the photos the staff took for us, the ability to spend time with Aaron; holding him, bathing him, having his great grandma able to come see him and hold him. The memory boxes the staff made with molds and prints of his hands and feet – we cherish every bit of it. The care and compassion shown to our family made one of the most horrible experiences a person can have a little more bearable. I appreciate that we have this available for people experiencing this astronomical loss.

  4. My heart goes out to all the families and friends that had to go through such a traumatic time in their lives. Some people say”” time heals all wounds. It doesn’t. My first daughter Valarie tragically passed almost 32 years ago .It was Halloween evening .I was taking my little sister trick or treating(we’re ten years apart I got married young at 19..I started to have pains and ended up going to the hospital expecting to have my “little pumpkin”…..Instead she passed November 1st 1990. I mostly remember the Dr. telling me in an un_ emotional matter of fact of voice ‘Well your baby is dead “….Everything else was a blur after that .My mom and best friend Bridget were there too…. As mentioned before they didn’t have the same care in place for this kind of loss. There was a very compassionate nurse that tried to help. My daughter Valarie never left my thoughts. I had a beloved son after Valarie and i became very protective of him. I lost another to miscarriage and sadly didn’t know if boy or girl. Years later I had and two other boys and a baby girl. When I found out I was going to have a baby girl. I was TERRIFIED until I was able to hold her and see she was breathing. I had lost another baby before her due to miscarriage…. It was the loss of the last miscarriage that I was able to find an appropriate bereavement group to help me. There would be a memory walk ,at Christmas we’d make ornaments honoring our loss babies and put them on the Christmas trees . Just remember I truly understand and hope this helps someone. Sincerely ,Jennifer

  5. Dear Linda,
    Thank you so much for sharing your personal story. I can relate to so many details you described. My first child, Alexander, would have been 32 years old this year. He was born October 13th and died 2 weeks later from meconium aspiration syndrome. He never came home from the hospital. Each October, for the rest of my life, is dedicated to my precious Alex.
    I received love & support from others I had met at a bereavement group, held at the hospital, for those who had suffered the loss of a child. I am so happy to know there is much more available to help grieving parents and families (Memory Box, photos, time given for holding and bathing beloved babies) than there was 32 years ago. My heart is with you and all those who have experienced this tremendous loss.

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Linda Kojich

Linda Kojich BSN, RN, NPD-BC is a clinical informatics nurse at Advocate Medical Group.