Shoshanna Drinks is a sweet, cherub-cheeked two-year-old who was born with Tay-Sachs disease, a rare genetic illness for which there is no cure. After developing normally for the first year of life, she started losing abilities such as feeding herself, sitting up and communicating. Last summer, her parents noticed Shoshanna’s symptoms growing more serious. After consulting with their pediatrician, they started care with Gilchrist Kids.
Shoshanna’s mother, Renny Drinks, says the Gilchrist team has helped improve her daughter’s quality of life and provide valuable support to her and her husband.
“This is a scary situation—we have never done this before and we don’t know at times what’s happening with her,” says Renny. “It’s really helpful to have a team to help us through so we are not alone.”
Shoshanna has a weakened immune system, so keeping her safe during the pandemic has been paramount. The family has been quarantining in their house as much as possible since last March, allowing only the Gilchrist Kids team to visit.
To ensure safety, Gilchrist team members follow strict safety protocols when visiting Shoshanna, as they do for all patients. These measures include meticulous hand washing and wearing full protective gear such as masks, a face shield, a gown and gloves.
The family is grateful to receive medical care for their daughter at home, rather than a doctor’s office where the risk of infection would be higher. They also appreciate having a comprehensive team—a Gilchrist physician, nurse, social worker, chaplain, hospice aide, music therapist and child life therapist—working together to address all of their needs.
Renny notes that while pediatric hospice implies something bleak, it is comforting to have the caring support of hospice.
The team, led by Dr. Bridget Pekrul, focuses on allowing Shoshanna to experience the highest quality of life possible. Gilchrist Kids nurse Erin Bull takes care of all of Shoshanna’s medical needs and provides support for Renny and her husband.
“It’s nice to have access to an expert 24 hours a day to consult with about her symptoms and what to do next,” Renny says.
Lacy Kidwell, a music therapist, sings to Shoshanna to engage her. Hospice aide Kimberly Ross provides “Caring Touch,” a type of massage, three times a week. Child life therapist Kyra Georgas uses play therapy and works with Renny and her husband to create memory keepsakes. And social worker Adele Black and chaplain Don Hohne provide emotional support.
“We know how difficult it is for families who have a seriously ill child,” says Erin, Shoshanna’s nurse. “Everyone on our Gilchrist Kids team has dedicated ourselves to this work. We will always do everything we can to help kids like Shoshanna have the highest quality of life and to walk with families through their journey. No family will ever be alone.”
Shoshanna died peacefully at home with her family on January 8, 2021.
To learn more about the Gilchrist Kids pediatric hospice program, visit gilchristcares.org/gilchrist-kids.