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Working with Grief
At the Johns Hopkins Children's Center, parents and staff stay connected even after the death of a child


Maria Housden spoke at this year's tribute service.


Bereaved parents sign a quilt.
For those who've had a child diagnosed with a life-threatening illness, the world not only falls away, but shrinks to the size of a pediatric floor. The nurses and doctors, therapists and people who deliver the meal trays witness intimate moments that even some family members miss. If the child should die, families often find that they share with the medical team a bond that's in a class by itself.

Every spring, those ties get renewed at an annual tribute service in memory of children who've died at the Johns Hopkins Children's Center. Finding a way to remember them was at the foundation of the service, first proposed by a grieving parent in 1985.

Pediatric oncologist Meghan Higman has attended the tribute service several times and says the event is also a big draw for inpatient and outpatient nurses in oncology. "Many patients develop a relationship with our team, and we become like a family," says the young assistant professor. "You don't get to see these parents much, but this is a time for them to talk about their child without somebody thinking, 'Why are you still talking about that?'"

Maria Housden recalls that when her daughter, Hannah, died at the age of 4 from a rare form of cancer, "in the early days of my grief there was a huge chasm between me and my old life, and the lives of others." She felt desperately lonely and longed for a place "where people were not anxious for me to 'move on.'" Housden, author of the book Hannah's Gift, and guest speaker at this year's tribute service, says, "Every bereaved parent I know carries this fear that their child will be forgotten."

That's exactly what the Children's Center doesn't want to happen. For the tribute service, the lobby is filled with photos of the children who've died-boys in baseball uniforms, girls with birthday cakes, with messages like 'Our first-born son, the love of our life.' A long-standing tradition during the ceremony is for a family member to say their child's name out loud as they take flowers from a basket passed across the aisles. "Some parents wait all year to say their child's name, others you can barely hear," says Elizabeth Reder, bereavement coordinator. "It's very emotional."

The Children's Center branched out beyond the tribute service when, in July 2000, it established Harriet Lane Compassionate Care, a palliative care program that not only supports families through the dying process and after death, but also tends to the emotions of its own pediatric staff. Every month, a case is presented during palliative care rounds. And after the loss of a patient, staff are given the opportunity to attend a debriefing session to discuss their professional and personal reactions.

"We examine what we did well, what we learned," says Reder. "The experience when we have time to prepare a child well for death, when we've been able to help the family create memories and legacies together is very different from when we didn't see it coming. It's very difficult for the staff to manage that grief. We want to be able to help the staff feel confident and competent, so that they, in turn, can offer support to families. So we are providing opportunities for them to come together to learn about and discuss patients' physical, psychosocial and spiritual needs."

Reder describes one example of a spiritual response in a child at life's end. "It can be as subtle as a child saying, 'I'm tired of all this. I wish I could go home.' Often they imagine that they see deceased relatives in the room, which is scary to the family, but never frightening to children. They feel reassured that they're not alone in the transition."

-Mary Ellen Miller

 

 

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