When Baby Ari left the hospital, she and her family were not alone. They were supported by The Elizabeth Hospice, who is one of only a few hospice providers in the country to have a dedicated team that cares for children diagnosed with a serious medical condition or life-limiting illness. Ari, who was born with a rare genetic disease, was not expected to survive her first day of life. She didn’t want to eat and she couldn’t swallow. At three weeks of age, Ari’s parents brought her home from the hospital, planning to spend the short time that they would have together as a family.
The Pediatric Care Team at The Elizabeth Hospice worked in concert with Ari’s pediatrician and specialists to relieve her symptoms and manage her pain. Through education and support programs, her parents had the resources to care for Ari at home confidently.
Pediatric hospice patients differ from general hospice patients in that children can receive curative treatment concurrent with hospice services. Additionally, the hospice needs of pediatric patients are unique. They require a specialized team that understands and can respond quickly to necessary changes due to the child’s continued mental and physical growth.
The services provided by The Elizabeth Hospice to pediatric hospice patients and their families went beyond relieving Ari’s pain and training Ari’s parents how to meet her physical needs, to providing emotional support for the entire family. One of these services was music therapy.
Music therapy has physical and cognitive benefits. And it’s an activity the family can enjoy together. This was especially important because Ari’s sister found it hard to relate to her sick and fragile sibling. The big sister helped Ari shake a tiny maraca during the music sessions and reach for the ribbons that danced over her head.
“The care that our family receives from The Elizabeth Hospice was amazing,” said Ari’s mom. “Everyone was so kind, and it was comforting to know we had their support.”
Elizabeth Hospice also cares for the littlest ones Ari “graduated” from hospice service and is growing bigger and stronger every day. She plans to attend preschool later this year when she turns 3.
If you know anyone who has a child with a serious medical condition or life-limiting illness, The Elizabeth Hospice is here to help. The toll-free number is 800.797.2050 or you can visit their website at https://elizabethhospice.org/ for more information.
This article was included in the September 2021 Live Well San Diego Blog.