Several months ago, we admitted a full-term infant to the NICU. We thought she would just need to transition for a short period of time and then go back to the newborn nursery and out with the parents who adored her. Unfortunately, as time passed, we began to notice issues that began to concern us. The tachypnea remained, she was very pale, her heart and liver were enlarged, and she was lethargic. When her medical issues persisted, her parents were distraught, they had been expecting a healthy full-term baby girl. After several consultations, the baby was presumed to have a life-threatening syndrome, and her prognosis was poor. The parents had begun blaming themselves and trying to find any reason they could for what was happening. We consulted with Gilchrist hospice and asked them to talk to the parents. The parents stated that they did not want their daughter to suffer, and they very much wanted to take her home. This meant going home with hospice support, oxygen, and nasogastric feedings. Initially, there was some concern among the medical staff about letting her go home without a definitive diagnosis. Gilchrist was helpful in discussing with the multidisciplinary team how a diagnosis may take a long time and not having one would not change the care provided. The family desperately wanted to take her home and be a family.
Danielle was this baby’s nurse the day that Gilchrist came to speak to the family. She became instrumental in setting up the education needed in order to get this baby home. Danielle planned for 3 days of educational topics that the parents would need to care for their fragile infant at home. Even though she was not scheduled to work, she came in extra on the third day in order to make sure that the family received consistent education, and were as prepared as possible to take their baby girl home. Danielle provided the support they needed to be able to take their daughter home and provide her with the love she needed before she peacefully passed away at home. Because of Danielle’s efforts, they were able to be a family, at home, for almost three weeks.