Supporting and comforting every family that loses a child is the goal of a new team at Kentucky Children's Hospital.
Before the palliative care/hospice team was created earlier this year, the services provided to grieving parents varied. Sometimes nurses would spend their off time and their money to help the grieving family mark the loss with a plaster cast of the child's feet or a special card. Sometimes that didn't happen. It was an uneven system.
"It was the nurses really, buying supplies," said Kayla Dixon, a pediatric palliative nurse.
Dixon is part of a new team that not only helps families after they lose a child but also while they are facing difficult end-of-life decisions.
Dealing with loss is a complicated process, said Dr. Horacio Zaglul, a pediatrician who started the team. And, he said, an important part of forming the team was to make sure there was a consistent way of helping the approximately 100 families who lose a child every year.
"We wanted to make sure that we didn't miss an opportunity to help," he said. Ideally the team, which includes himself, nurses, counselors and hospice specialists, can get involved in the case as early as possible and stay with the family through the end, he said. Patients are referred to the team by their primary doctors. With a focus on palliative care, which is the relief of the pain, symptoms and stress of serious illness, they can help children have the best quality of life.
From there the team can help families tackle the tough decisions surrounding caring for a gravely ill child, including the spiritual questions inherent in such a blow.
For example, the team helps parents decide whether it's possible to take an ill child home to die rather than stay in the hospital. They can help make sure that something as traumatizing as turning off a breathing machine is handled with compassion and care. They help them come to terms with what will ultimately happen while making the most of the time they have.
The team also helps the family after the child dies, creating plaster casts of the child's hands and footprints and a picture when possible. All are placed in a special box. The team refers the family's to grief support in their area and remains available as a resource after the family leaves the hospital, too.
Everything associated with that child's life, no matter how short, affects the parents, said Amy Brin, who worked with the doctor to form the team.
"There are very, very powerful moments that parents are going to remember forever," she said