Wednesday, March 20th, 2019

Edmarc Hospice for Children Story


EDMARC HOSPICE FOR CHILDREN

A place of hope and life

by Rob Lauer


Over the past 18 years, Executive Director Debbie Stitzer-Brame has witnessed the tremendous expansion <BR>of Edmarc’s work in caring for sick children and their families.

Over the past 18 years, Executive Director Debbie Stitzer-Brame has witnessed the tremendous expansion
of Edmarc’s work in caring for sick children and their families.

The common association of hospice care with hopelessness is one that Debbie Stitzer-Brame—Executive Director of Edmarc Hospice for Children—wishes to dissolve.

“Though adults usually enter hospice care when they’re given a prognosis of six months or less to live, that’s not the case with children,” she explains. “Last year we had more children with healthy discharges than we had children who lost their battle with disease. That is so encouraging! So, in our world we don’t give up hope.”

Debbie concedes that even among those who are familiar with the work of Edmarc, misconceptions still persist.

“Even now most people think that all the children we treat are afflicted with cancer,” she says. “We also treat those suffering with congenital and genetic disorders, and from neuromuscular diseases—to name but a few. When a child is battling any sort of life-threatening disease, its impacts their entire family. Can you imagine what it’s like for a parent to be told by a doctor that their child has cancer? Once they hear the word ‘cancer’ they probably don’t hear anything else the doctor says. And should a child lose their battle, the entire family—the parents, siblings, grandparents—suffers. So, we work with families for a year or more after they lose their little one.”


“I feel blessed to be a part of this work.
We allow moms and dads to be moms and dads—not clinicians.
That’s what we do.”

—Debbie Stitzer-Brame



Established in 1978 as the nation’s first hospice for children, Edmarc remains the only such organization in Hampton Roads. During her 18 years with Edmarc, Debbie has seen tremendous growth in the number of children and families who turn to them for help.

“When I started here, we had 18 patients,” Debbie comments. “Now we have 70. In addition, we’re offering bereavement services to 164 families.”

One young widow, who prefers to remain anonymous, can attest to the healing powers of the bereavement services for children and families. “After we suddenly lost my husband and father of my five year old daughter, we were lost in a deep sadness; our worlds were turned upside down. I am very happy to see how Edmarc’s Peace by Piece Support Group is helping my daughter to cope with her feelings of losing her daddy by honoring and treasuring the good memories of us as a family. We are forever grateful to every member and volunteer of the Edmarc. They may not know it, but little by little they are helping my daughter and me to restore peace in our hearts. In a way, they have became a second family to us.” 

Debbie goes on, “I don’t think the number of patients increased because more children are getting sick; I think it’s because there’s greater awareness of what we do.”

Despite an ever-increasing awareness of Edmarc and the services that it offers, many people are unaware of how the hospice came to be—and of the story behind its unusual name.

“In the mid-1970’s when the hospice movement arrived in the U.S. from Europe, it was considered a service primarily for elderly adults in the final stage of life,” Debbie explains. “At that time in Suffolk there was a little boy named Marcus Hogge who was dying from a serious neuromuscular disease. Marcus had been born healthy but at age 3, he began to lose the ability to walk and talk. Marcus had undergone long periods of hospitalization, and his parents were desperate about the quality of his life. So, they turned to their minister—a young man named Ed Page who was the pastor of Suffolk Presbyterian Church. Ed turned to his congregation and they worked to establish medical services to care for critically sick children at home. Tragically Marcus lost his battle with neuromuscular disease, but because of the work begun by Ed, he was able to die at home surrounded by his parents and sisters. What’s amazing about this story is that while Ed was working so tirelessly to help Marcus and his family, he died from a brain tumor. He was only 32 years old, but before dying he had laid the foundation for a children’s hospice. Suffolk Presbyterian Church pressed forward with the work that Ed had started. When the time came to find a name for the hospice, it was the kids in the congregation who came up with the answer. ‘We’re doing this because of Ed and Marc,’ they said, ‘so let’s call it Edmarc.’ Leave it to kids,” Debbie adds with a smile.

Debbie’s passion for serving sick children and their families is as strong now as it was 18 years ago.

“I think the rest of the staff feels the same way,” she says. “You don’t do this kind of work to be important or for the attention: you do it because you want to do something for others.”

Unlike other hospices and healthcare providers, Edmarc does not operate on a fee for service basis. 

“Only 10 percent of our budget comes from insurance,” Debbie explains. “We have to raise a million dollars a year, and we rely heavily on community giving. The majority of all the money goes directly into caring for the children and their families.  Only eight percent of our budget goes toward administrative costs. We provide sick children with high-tech treatment in their homes—the same sort of treatments that they would otherwise receive only in a hospital. In hiring nurses, we look for a wide variety of skill sets because on one hand, they’re going to have to care for very small children and on the other hand, they’ll also be caring for teens who could weigh over 200 pounds.”

Debbie is convinced that what makes the biggest difference in the treatment of a sick child is the personal relationship they develop with the professional providing their care.

“Early in my nursing career there was a lot of discussion about treating the ‘whole’ person and not only the symptoms and disease,” she says. “That is a rarity, but here at Edmarc, when caring for a child and their family, they are the center of the universe. You have to be able to build a relationship with the child to get anywhere.”

“I remember one 5-year-old girl—Abigale—who had leukemia,” Debbie continues. “The first time I saw her, she was having blood drawn. Actually, I heard her before I saw her; she was screaming and was completely traumatized. But we took her on, built that trusting relationship with her. Eventually we reached the point where, when it was time to draw blood, she could calmly ask us, ‘Will this be a big ‘ow’ or a little ‘ow?’ ” Debbie smiles at that memory, adding: “Abigale was a healthy discharge. She’s now a teenager living in California.”

“I feel blessed to be a part of this work,” says Debbie. “We allow moms and dads to be moms and dads—not clinicians. That’s what we do.”




EDMARC Hospice For Children

516 London Street
Portsmouth, VA 23704

757-967-9251
http://www.edmarc.org