Imagine the unthinkable…
Your child or a child you love is either medically fragile with a chronic condition, has a life-limiting illness or is facing end-of-life care. The child’s life is not like that of other kids. Days and nights are spent in the hospital or amidst intensive round-the-clock medical care at home. Rather than school and activities, sports and play, time is marked by doctors’ visits, clinical tests, treatments and procedures.
While a critically ill child wants nothing more than to be at home with his or her family, there is frequently no option but to be in the hospital for the needed care. For children whose condition allows them to be at home, there is no formal support for the family caregivers – no respite for parents who may be caring for other children and trying to hold their job in addition to providing constant care to their ill child.
For children dying of a progressive, life-limiting illness and who are relegated to either the hospital or home for end-of-life care, at some point either location may not be a desirable place for the dying child or his or her family during those final days and weeks.
As in adult care, there is a need in our region for a facility that incorporates a philosophy of care which focuses on enhancing the quality of life for children living with progressive, life-limiting illness. Additionally, there is a need for respite care (“rest care”) facilities, which would allow medically fragile children a weekend or week stay vacation, allowing them and their families the support and rest they need periodically.
Help us open the doors to Sarah House
where seriously ill children can come for the care of professionals and the comforts of home.
Data & Support from Jonathan Cottor, Co-Founder of Ryan House
Most of the 129,313 babies born in Ohio during 2020 will enjoy normal, typical lives. Sadly, about 1% of these children will experience chronic, complex medical conditions that shorten their life expectancy and prevent them from reaching adulthood. Parents always hope for a cure. Some children will survive with effective medical treatments. Also in 2020, 1,026 children under 19 years old died of natural causes in Ohio.1
Children with complicated, chronic, and/or life-limiting illness place heavy demands on family members. Despite becoming expert caretakers, parents are often taxed beyond their ability to cope well, balancing spousal demands, work schedules, and parenting duties of other children. In the U.S., there are approximately 2.1 million children with medical complexities (CMC)2, and according to the Centers for Disease Control and Prevention (CDC), over 40,000 children under 19 years old died in 2019. A 2020 published systematic literature review of family experiences with palliative care for children at home noted that “respite care was needed in order to cope with everyday life.”3 “Respite is a gift” is a common theme expressed by parents because of the continuous caring required for their child throughout the day and night.4 5 While the family home may be a suitable environment for these children, competing forces increase pressure on family caregivers and raise the critical need for supplementary out-of-home solutions. These challenges include pediatric home health nurse shortages6, longer lives of CMC due to medical advances, and insufficient insurance reimbursement.
Ohio’s expertise is recognized with 2 of the Top-10 Children’s Medical Centers in the U.S., yet there are no free-standing Children’s Hospice Homes dedicated to supporting this population with overnight respite, palliative care, and when needed end-of-life care within its borders. But momentum is building.
Sarah House (aka Sarah Zepernick Foundation), a 501(c)3, was incorporated in 2007 to create Ohio’s first Children’s Hospice Home Care model. The leadership team at Sarah House is actively participating in a national coalition with the three existing U.S. Homes, and another 15+ emerging communities to share learnings and scale best practices. While the original Homes opened primarily through philanthropic support, recent operations have succeeded in securing a portion of expenses through important Medicaid reimbursement which will ease ongoing sustainability of this model.