Sophia’s Story

Sophia was a happy baby girl, born into a family of four with two big brothers excited about their little sister and parents excited about a little girl. Sophia was diagnosed with severe reflux soon after birth. However, other symptoms begin to appear as she grew. By 8 months old, Sophia had poor weight gain, continued reflux, usual eye movements, and was very cranky.

After many tests, physician visits, and specialists, Sophia was diagnosed with a rare metabolic disorder, Gaucher disease with a poor prognosis. The weeks following Sophia’s diagnosis, the family found themselves in shock and wondering how they were going to care for a dying child.

Sophia declined very quickly. Over the next 2 months, Sophia began to receive her feedings through a tube. She required oxygen to breath. But the crankiness was the most troubling symptom.

I met Sophia and her family one January morning. As I entered the room, I saw mom pacing back and forth, holding and bouncing Sophia. Sophia was fussing and wiggling in her mother’s arms. I could tell her mother had not slept that night. Sophia’s dad appeared exhausted as well, while the boys were running around the house.

I asked if I could hold Sophia while we talked. The mother said’ “Yes, please.” As I began talking to the family and listening to their concerns, I learned that neither mom nor dad had slept very much over the past 4 days. Sophia’s crankiness had increased and she was having difficulty breathing. During my visit, the family shared their story with me and expressed their concerns. In tears, the mother looked at me and said, “I just want her to be comfortable and allow us to sleep.”

I worked with the family and physicians to develop a plan to make those two things happen. I remember the first night Sophia slept comfortably. The dad called me first thing in the morning to say Sophia slept through the night, but they didn’t because they kept getting up to check on her.

Sophia spent the last 4 days of her life comfortably at home. The day she died, the mother called me to thank me….for what, I thought…but she said those last 4 days had allowed her family to be a family again. She told me about how they had spent their morning laughing and taking pictures together. Sophia had even licked an apple that morning and made the whole family laugh when she made a sour face.

As I look forward to 2012, I reflect on the children and families I have cared for in the past. How they have touched me; how I have learned from them; and how committed I am to caring for children and their families with life limiting conditions.

 To learn more about Gaucher Disease, please visit www.childrensgaucher.org

To learn more about Covenant Hospice and the services we provide, please visit www.covenanthospice.org

This story was submitted by our Director of Children and Family Support Services, Holly Herring.

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