The life limiting diagnosis for their baby daughter, Dawn, brought only unanswered questions for Danielle Zang and Jesus Espinoza. Told that the little girl had a rare and fatal genetic disorder, medical professionals said only to take her home and “keep her comfortable.”
It wasn’t until Dawn was admitted to the hospital many months later that Danielle and Jesus were finally guided to the Gilchrist Kids pediatric hospice program – and to the therapies and support that would allow Dawn to thrive for the next 11 months.
So when the couple learned that their second child, Nathan, who was born five months prior to Dawn’s death, suffered from the same condition, they knew they would eventually need Gilchrist Kids again.
“Without Gilchrist Kids, we would have lost Dawn a lot sooner, and we would never have gotten to see her meet some of the most basic milestones,” Danielle said. “Knowing there was also help for Nathan provided peace of mind. If something happens in the middle of the night, I can call and say, ‘What should I do?’”
For Danielle and Jesus, the program offered so much more, including help accessing the therapies that would teach Dawn to roll to her side and balance herself, and encourage Nathan, now 2, to sit with support and say words like “Dada.”
The Gilchrist Kids program also served as a bridge for support in the months between Dawn’s death and Nathan’s admission to hospice seven months later. During that time, Jody Staley, the Gilchrist Kids nurse who had cared for Dawn, kept tabs on the family, making periodic visits, counseling the couple and checking on their baby boy.
“I said right away, ‘I want to be Nathan’s nurse.’ I already knew the family,” said Jody. “It’s been encouraging to be able to make sure Nathan does have a quality of life. Danielle only has to text me and I’ll be there.”
When Gilchrist Kids was added to the Gilchrist Hospice Care complement of services in 2010, it filled a void; at the time, no other hospice in the region was caring for the youngest of patients with life-limiting conditions. Six years later, the program has provided care and crucial support for nearly 200 patients aged birth to young adult and for their extended families.
At Gilchrist Hospice Care, patients and families may benefit not only from the extraordinary care of our nurses, social workers, chaplain, aides, counselors and volunteers but also from an array of specialized programs and offerings designed to ensure that all their needs are met, that the end of life is rich and meaningful and pain-free, and that loved ones who will be left behind have the strength to journey on. This story highlights just one of these programs, all designed with the knowledge that…every feather helps a bird take flight.