Five-year-old Levi Shu groaned, then sighed, as his stiff 30-pound frame melted into his mother’s body. A laughing little brother climbed into a chair and the “Daniel Tiger” theme song played through an iPad: “It’s a beautiful day in the neighborhood. …”
It’s almost possible to ignore the 20 canisters of oxygen that breathe life into Levi’s body, the whir of a feeding machine that delivers food to his stomach and the economy-size jug of hand sanitizer that greets a revolving door of nurses, therapists and caregivers.
Each day, the Shu family rides the edge between life and death, joy and grief. Levi’s next cold could be his last. Another bout of pneumonia, doctors warn, could be the “doorway to death.”
Born without a heartbeat or a breath, Levi lives with severe brain damage from lack of oxygen at birth. Three weeks after he was born, doctors sent him home to die. Levi’s mother, Dannell, and father, Peter, have provided 24/7 ICU-level care in their northeast Minneapolis home ever since.
When the time comes, they don’t want Levi to die at home. They would rather spend their final days with him at a children’s hospice, a place where his large community of loved ones can gather to say goodbye, and where they can finally relinquish the caregiving role to others.
“There is not a place to go for a family like ours,” Dannell said. “In those precious last moments, I’d like to stop being the lead nurse, doctor, therapist and just go back to being Mom.”
Crescent Cove, a St. Louis Park nonprofit, is working to make that happen by raising money to build the state’s first children’s hospice home to offer families like the Shus respite and a nurturing setting for end-of-life care — all at no cost.
Even though many families with terminally ill children prefer to care for their youngsters at home rather than have them hospitalized, proponents of pediatric hospice facilities say a third choice is essential.
Most pediatric hospice patients receive services from agencies typically oriented to adults, but kids in hospice die of different diseases than adults do, so their needs are often different.
“When families come to the end of life with a child and they don’t want to be at home or the hospital, or maybe they can’t, there’s no other option,” said Crescent Cove’s founder Katie Lindenfelser.
Even though the hospice movement is growing and there are more than 40 pediatric hospice homes in other countries, there are only two hospice homes for children in the United States, in Arizona and California.
The paucity of resources for a family with a terminally ill child is “quite shocking,” said Dr. Scott Schwantes, medical director of palliative care at Gillette Children’s Specialty Healthcare and a board member of the Minnesota facility.
Schwantes said the end of a child’s life requires specialized care and a different environment from what adult hospice centers provide.
“Children are not just little adults,” Schwantes said. “There’s still a life being celebrated, however short a time is left. Crescent Cove would be a place of light, enjoyment and laughter.”
A place to die, a place to live
Adults in a hospice setting usually spend their last days quietly in their rooms with family members beside them. At a children’s hospice center, youngsters and their families might be hanging out in a game room or creating artwork, laughing or listening to music.
Lindenfelser has visited pediatric hospice homes around the world and said they look and sound different from adult hospice homes. Spaces are bright and colorful, and rooms are large enough for families to gather at a child’s bedside.
“Kids are living right until the ends of their lives,” Lindenfelser said. “Nobody’s giving up hope; this is to help them live as fully as they can as a family … in the midst of the devastation of their child’s diagnosis.”
Sometimes space at home is an issue. Hospital beds, oxygen tanks and ventilators leave little room for loved ones to gather near children during their final days. Divorced parents of a dying child might want a neutral place to say goodbye. And some families struggle with remaining in their homes if that’s where their child passed away.
Lindenfelser hopes to break ground on a facility in the next year, but the project has been slow to take off. It has gained a lot of support and momentum since a $10 million capital campaign, along with the Harmon Killebrew Hospice Home for Kids Fund, was launched in 2008. But the project still needs more than $9 million to pay for a site and two years of operating expenses.
The center is relying on philanthropic dollars to provide free room and board, and services to patients that aren’t covered by insurance. These include grief counseling, art, music and massage therapy, pediatric palliative care and caregiver support.
Pediatric palliative care is an emerging field that aims to improve the quality of life for the patients with life-threatening conditions and their families. This includes pain management, emotional and spiritual support, respite and bereavement.
The plans for the facility include eight bedrooms, as well as three suites for families with terminally ill children. Among other services, it would provide 24/7 nursing care, play spaces for siblings, massage therapy for all family members, a place for family members to sleep and the services of a chaplain.
Lindenfelser said fundraising has been a challenge, partly because people have a hard time wrapping their heads around a model of care for dying children.
“In our culture there’s a lot more satisfaction in funding research for a cure,” she said.
Ted Bowman, a Twin Cities area educator and consultant specializing in grief and loss, said pediatric hospice homes are more personal — like home — but without the pressures of home.
Parents can be parents instead of nurses, doctors and therapists, he said. Care is centered around the whole family, not just the dying child.
“When a child dies, it breaks the norm. It’s off time. It’s not the way it’s supposed to happen, so there’s a different kind of grief that occurs for families,” he said. “We don’t picture that we’re going to bury our children; our children our supposed to bury us.”
Helping families now
Despite still needing to raise significant funds, the Minnesota project is fulfilling its mission to provide in-home palliative care and support such as delivered hot meals, in-home massage therapy and weekends of respite.
Julie Martindale’s son Isaac was one of the critically ill children it has helped care for in the comfort of their homes since it started in 2008.
“Isaac is dying and there’s no place for a family like ours to go,” said Martindale, of Elk River, in October. “Crescent Cove is helping us focus on his life and not his death, and that’s beautiful.”
Isaac died Nov. 22 in the arms of his parents at home.
During his time in hospice at home, Martindale said, caring for Isaac and the uncertainty of what each day would bring was stressful, exhausting and lonely. Daily life revolved around Isaac’s treatment — the medication he took, the amount of oxygen he required. Sleep was limited and sometimes didn’t happen at all.
With six other children at home, Martindale said, the center gave the whole family an opportunity to take a break from the intense round-the-clock responsibilities of caring for Isaac, including a weekend at Faith’s Lodge, a Wisconsin retreat for grieving families.
Now, Martindale will look to the center for bereavement support for her other children.
“We need to know how to help our other children move through this process of grief in the healthiest way possible,” she said. “We need Crescent Cove.”