Many children with life-limiting conditions lack adequate support when nearing the end of their lives. “There is relatively little awareness of the need for children’s hospice services,” Lindenfelser says. “Many people assume that there are options available for these families, while the reality is that there aren’t.”
As reported by Nora Clos in St. Louis Park Magazine’s February 2015 Edition:
Crescent Cove children’s hospice offers respite to children with life-limiting conditions and their families
When Melissa Johnston’s newborn daughter was diagnosed with trisomy 18, a rare chromosomal disorder, a day and a half after she was born, Johnston and her husband knew there would be difficult times ahead. The disease is a serious one—only 10 percent of infants born with the condition live to be a year old.
Johnston, a Minnetonka resident, says that she and her husband struggled to find the support they needed at the hospital. “It was a very sterile environment,” she explains. “There was no support available for couples in our situation; there was no sense of community.” The Johnstons were discharged from the hospital and left to deal with their young daughter’s illness and eventual passing in their own home.
Unfortunately, many children with life-limiting conditions lack adequate support when nearing the end of their lives. Unlike elderly patients, whose end-of-life care is becoming a greater national health care focus, children with a shortened life expectancy don’t have a clear place in today’s health care system, says Katie Lindenfelser, founder of Crescent Cove, a St. Louis Park-based nonprofit that serves children with life-limiting conditions and their families.
“There is relatively little awareness of the need for children’s hospice services,” Lindenfelser says. “Many people assume that there are options available for these families, while the reality is that there aren’t.” In fact, she continues, there are only two children’s hospice homes in the entire United States, and none of them are located in Minnesota. Families are often caught between extensive stays in hospitals and caring for their terminally ill children at home, with a very limited support network.
“The situations these families are facing don’t have a place in the health care system right now,” Lindenfelser says. “Children with life-limiting conditions have very different needs from those of adults in hospice care, or even in hospitals.”
Crescent Cove’s plans for an eventual hospice and respite center include family suites, gathering areas, physical therapy facilities and more.
Crescent Cove was founded with the goal of creating a facility in Minnesota to serve the families of terminally ill children. Lindenfelser was trained as a board-certified music therapist and has worked in hospice and palliative care (holistic care focused on relieving stress and pain, and improving quality of life for people with serious illnesses) for most of her career.
Earlier in her career, Lindenfelser moved to Australia to complete a master’s degree in music therapy and children’s hospice and palliative care, where she worked with families at a children’s hospice home—and found that the international picture of hospice care for kids is very different from the one in the U.S.
“The United States is way behind in providing this kind of care,” she explains, noting that there are 40 children’s hospice homes in the United Kingdom, two in Australia and several in Canada.
For a short time after finishing her master’s program, Lindenfelser split her time between her native Minnesota and Australia.
“At one point, my husband asked why I was traveling to Australia to work in their children’s hospice rather than just working at one in Minnesota,” Lindenfelser says. “My answer was that we don’t have one, which my husband didn’t even realize.”
That was an “aha” moment for Lindenfelser—the moment she realized that increased awareness was the crucial first step in bringing hospice and palliative care services to kids in Minnesota. She began to talk with local hospitals, where she worked as a music therapist, about the lack of services. “The hospitals were clear that, while it wasn’t a priority for them, there was definitely a lack in the services for children with these conditions and that there was a great amount of need in the local community,” she says.
In 2009, Lindenfelser founded Crescent Cove (at the time called Children’s Lighthouse of Minnesota) to advocate for children and families in hospice care. Since then, she’s worked to raise awareness and funds with the ultimate goal of building a children’s hospice and respite home in the Twin Cities that families can use free of charge. Currently, the Crescent Cove team works out of its St. Louis Park office—donated by a local property company—on plans for the eventual home. They’re working on raising money for families’ respite weekends, among other initiatives.
This past July, Bob Tift was hired as the organization’s president. Tift has spent the past 22 years working in fundraising at Benilde-St. Margaret’s School in St. Louis Park. Before that, he was a special education teacher, and has a long history of working with children with serious medical disabilities.
Tift is no stranger to the need for children’s hospice care. His late grand-niece Maryah was diagnosed at age 9 with bone cancer, which she battled until just after her 16th birthday in 2010. Last year, Tift was seeking a career change and his nephew, Maryah’s father, connected him with Crescent Cove, which had helped support Maryah’s family after her illness. Tift met with Lindenfelser about coming to work for the organization.
“Katie was looking for someone who was passionate about Crescent Cove’s mission, which I am, and someone with fundraising expertise and connections in the Twin Cities donor community, which I have,” Tift says. “It turned out to be an excellent fit.”
Since last summer, Tift and Lindenfelser have kicked their efforts into high gear. The two developed a capital campaign, with a goal of raising $10 million to fund the construction and operation of the first residential children’s hospice home in the Midwest. The project is set to break ground as soon as fundraising reaches $7.5 million. The home will provide not only hospice care (for children nearing the end of their lives), but also respite care for children with life-limiting illnesses.
“When you have a child with a very rare or very serious disease,” Lindenfelser says, “the stress on the families in unbelievable. The parents can’t leave the child with a babysitter or family member, and so they become very stressed and very tired.” Crescent Cove’s services will allow families to temporarily put their child in the care of highly trained and compassionate clinical professionals, so Mom and Dad can make time for self-care and rest.
Crescent Cove’s hospice home is slated to be built on the land close to a nearby medical center, which provides adult hospice services and residential care. “The idea is that, while we will be independent, we can share services [like] linen services, snowplowing and landscaping,” Tift says. “It could help reduce our costs, which is essential, because we want to offer these services free of charge.”
The home will include several bedrooms and family suites, common gathering areas for families, and physical therapy facilities. The focus will be on providing a home-like environment—very different from the sterility of a hospital.
On February 7, Crescent Cove will host its third fundraising gala. “The event includes silent and live auctions, some entertainment, and families sharing stories to raise awareness of the issues that drive our mission,” Tift explains. The event, and the organization in general, has drawn much support from the Twin Cities community. “We’ve partnered with everyone from the family of [former Twins player] Harmon Killebrew, who was very dedicated to improving the lives of kids with illness and disability, to Cities97 and UnitedHealth Group,” Tift says. “People are very eager to get behind what Crescent Cove is trying to accomplish.”
Since the Johnstons lost their daughter, Melissa Johnston has stayed dedicated to helping advance the mission of Crescent Cove and children’s hospice services in general. She has served on the organization’s marketing committee since 2011 and often shares her experience at fundraising events. “It’s just so important that we make these resources available to the families that need them,” Johnston says. “There is an immense void that needs to be filled right now, but we’re definitely working our best to fill it.”