Stories

Catalysts to Care

How donors help shape our programs and services.

Lisa Honold

Despite no family history of hearing loss, Lisa Honold, (above center) and her husband Jim learned that they each have a genetic variation that results in a 25% chance of hearing loss for each of their children. Lauren, 10, is hard of hearing; Luke, 8, is deaf; while Collier, 6, has normal hearing. Seattle Children’s Childhood Communication Center (CCC) team guided the family along the steep learning curve needed around treatment hearing loss and treatment. Donor supported programs and services that are helping Lauren and Luke thrive.

Donor support enables Seattle Children’s to offer innovative services and programs that help patients and families thrive.

“Most people don’t know how exhausting it is to be hard of hearing,” says Lisa Honold, the mom of three children, one who is deaf, one who is hard of hearing, and one whose hearing is typical. “It’s like always being in a foreign country. You’re always on high alert, watching all the time – did that person talk to me? What did she say?”

Since 95% of children who are deaf or hard of hearing (DHH) are born to parents with normal hearing, most families, like the Honolds, face a steep learning curve to understand the different options and opportunities to help their children learn to communicate – and to learn how to communicate with their children.

“Our medical system is designed for diagnoses, medical tests and direct clinical treatment, but sometimes what a child needs to be successful in life falls outside what doctors and nurses can provide in a clinic or hospital,” says Dr. Kathy Sie, an ear, nose and throat specialist. “As government budgets get tighter, there is less support to provide what are considered ‘social services.’ The urgency compounds because DHH children do their best when they get professional support early in life.”

Having the backing of people who are willing to help us address some of these needs keeps me an optimist

– Dr. Kathy Sie

Community makes it happen

Kathy Sie

Ear, nose and throat specialist Dr. Kathy Sie developed Seattle Children’s Childhood Communication Center to address the complex medical, emotional, social and developmental issues children with profound hearing loss face. “As physicians we see what the kids and families need. It’s great when we can establish a donor partnership to put together a program that helps address some of the needs.”

Donor funding made it possible for Sie to develop Seattle Children’s Childhood Communication Center, which provides a wide-ranging approach to treating hearing and communication problems and offers ongoing support for children and their families.

Thanks to this support, the center can provide programs and resources that help patients and families thrive (like tuition for sign language classes for family members of DHH kids so they can all learn the same language) but aren’t covered by medical insurance or other forms of reimbursement.

“I think we’ve used just about every service they offer,” says Honold. “When we were new to this situation, we didn’t even know what to ask for. The specialists and resources at the center helped us get educated about what we needed to know and begin to piece it all together.”

Key elements of facilitated early intervention programs and support groups are supported by philanthropy, including the educator who makes weekly home visits and leads playgroups for Family Conversations, the early intervention program that addresses needs of kids and families during the crucial development period from birth to age 3.

“Those support groups were like a lifeline,” recalls Honold. “Our educator brought knowledge of deaf education and wisdom about parenting. It was such a relief to share experiences with other parents and learn about raising kids with hearing loss – like how to advocate for your child or teach them how to understand emotional cues on someone’s face.”

A shared responsibility

Philanthropy enhances care and services throughout Seattle Children’s. Donors and volunteers were the very genesis of Seattle Children’s, notes Doug Picha, who has led Seattle Children’s Hospital and Research Foundation for more than 30 years. “For 107 years, donors and Seattle Children’s Hospital have been synonymous. Our founders set out to provide care to children regardless of a family’s ability to pay. As our mission has grown, our community has responded with support that gives our providers latitude to do what they think is needed and helps our researchers improve the practice of pediatric care.”

Kid- and family-centric

Shellans

Judge Gerard and Barbara Shellan have funded several special spaces where kids can just be kids – even when they need medical care, including the outdoor play area at Seattle Children’s Bellevue Clinic.

Children process the experience of illness and hospitalization differently than adults, and activities like music therapy, art therapy or even spending time with a therapy dog go a long way in promoting healing, coping with pain or helping patients express feelings and concerns. Our art and music therapists work with patients at the bedside and in small groups, and the Pet Partners Program makes regular patient visits. These programs are supported almost entirely by donations.

“Seattle Children’s providers believe in treating the whole child, not just his or her medical problems. Therapeutic play provides a positive hospital experience for children and teens,” says Debbie Kruse, director of our Child Life department.

Donors help make it possible for Seattle Children’s to provide an interactive, fun, safe environment for patients, siblings and caregivers. Judge Gerard and Barbara Shellan have funded several special spaces where kids can just be kids – even when they need medical care. The Shellan family’s first project was the Teen Zone on our Seattle campus, a place for hospitalized teens and siblings age 12 and older to hang out, play games or do arts and crafts. On the Seattle Children’s Bellevue Clinic campus, the Shellans funded an outdoor play area and a supervised playroom for brothers and sisters of patients who are having a clinic appointment or surgery.

Other programs help families adjust to a changed reality that result from illness or trauma. For nearly 25 years, Seattle Children’s Journey Program has helped thousands of families cope with the unbearable feelings of loss that follow the death of a child. The program is one of the few in the nation with a mental health, rather than a spiritual, focus. Martha and Collum Liska helped establish the program following the death of their daughter, Ann, who was a long-term patient. Thanks to the continued support of many, the program remains free and available to any family in the region coping with the loss of their child, whether or not their child was treated at Seattle Children’s.

Clinical innovations

Doug Picha

Philanthropy is what helps us go above and beyond, it represents the resources that makes room for possibilities says Doug Picha, who has led Seattle Children’s Hospital and Research Foundation for more than 30 years.

Rusty Novotny

Neurologist Dr. Rusty Novotny is national leader in novel imaging techniques that combing data from different imaging systems to produce 3-D digital pictures that reveal aspects of a patients brain structure and function that can’t be detected from any one source. Philanthropic support helped recruit him from Yale in 2009.

Philanthropic support can bring innovative new services to life and is instrumental in recruiting providers and researchers. An endowed chair created by the Alvord family helped recruit epilepsy specialist Dr. Rusty Novotny from Yale in 2009.

Novotny is a national leader in combining data from different imaging systems – such as MRI, CT scans and PET scans – to produce a single 3-D digital picture that can reveal aspects of a patient’s brain structure and function that can’t be seen with a single imaging technique. The ongoing support from an endowed chair helped Novotny introduce this technique at Seattle Children’s, enhancing our doctors’ ability to diagnose disturbances in the brain, pick the most appropriate therapies and map critical areas of the brain prior to surgery.

Neurosurgery division chief Dr. Jeff Ojemann shared Novotny’s interest in novel imaging techniques. He leveraged their knowledge to bring MRI-guided laser ablation surgery to Seattle Children’s, making our pediatric epilepsy program one of the first in the country to offer this advanced option that allows surgeons to treat very specific locations in the brain with minimal damage to the surrounding brain tissue.

“Since patients come here from all over the region, we have a special responsibility to be at the forefront of the best possible treatments,” says Ojemann. “The partnership between our hospital and donors made this possible.”

Adds Novotny, “Philanthropy provides us the resources and time to evaluate new ideas, new techniques and new ways of doing things. It allows us to improve care and introduce better treatment options.”

“As physicians, we see what the kids and families need, we hear their challenges everyday in clinic,” reflects Sie. “It can be frustrating to know what is needed but not be able to meet their needs. Having the backing of people who are willing to help us address some of these needs keeps me an optimist.”

Leaving a Legacy of Hope

Gifts from the estates of donors – known as charitable bequests – have long been the largest single source of funding for uncompensated care at Seattle Children’s.

“Bequests make giving more democratic. Some of our biggest bequests come from donors of modest means who led a humble life,” says Lorraine del Prado, who spends a lot of time with members of Seattle Children’s Guardian Circle, an affinity group for people who are providing for the hospital in their estate plans. “Anyone can really make an impact and help us meet our founding promise to provide needed medical care to every child in our region regardless of whether the family can pay.” You can contact Lorraine del Prado for more information at 206-987-4977.

Published in Connection magazine, December 2014