"Loving with Grace" helps parents with poor prenatal diagnosis
It was a sad and devastating moment when 1-day-old Grace passed away in her parents’ arms at their home. The parents had received a poor prenatal diagnosis, but had decided to continue the pregnancy.
It had been a difficult, emotional journey—one that few parents experience.
Two labor and delivery nurses, Amanda Delridge, RN, and Jill Royer, RN, wondered how they could have made the parents’ journey easier.
“We were lucky to have crossed paths with Grace’s family and blessed that they let us walk part of their journey with them,” said Delridge. “We learned more from that experience than we could have ever foreseen.”
The experience demonstrated there was a lapse in support and guidance for those who declined intervention in these delicate cases. They decided to take action.
Delridge and Royer spent months researching other hospital programs for parents in similar situations. They developed a program designed to meet expectations of care in this specialty and the specific needs of patients.
Universal expectations of care include:
- provide support, courage and compassion.
- be a guide, listen and help prepare.
- offer acceptance, patience and time to these families as they go through such a difficult journey.
- provide advocates, through people and a system that can protect their dignity and desires with respect.
“Our goal was to find a way to organize support that could meet these expectations,” said Delridge.
An interdisciplinary team was formed. It consists of both coordinators, a neonatologist, a perinatologist, a social worker and a psychologist.
Other resources include home care/hospice, bereavement services and spiritual care.
A brochure was designed and a birth plan created. The birth plan includes personal requests, measures to take with the infant, spiritual care, mementos, support prior to delivery and photography options.
The perinatal palliative care program is named “Loving with Grace,” in honor of the infant who died. Delridge and Royer are program coordinators.
“We are here, wishing families didn’t need us, but ready to help them write their own beautiful story,” said Delridge. “Parents have been extremely grateful for the program.”
