Katie Bella von Gillern was born with a left diaphragmatic hernia. Diagnosed just before her birth, she was in the right place at the right time, and received life-saving surgery at Children’s – Minneapolis shortly after she was born. Eight months later, Katie’s life was in jeopardy with an intestinal blockage and a second surgery saved her once again.
After Katie had recovered and life had calmed, Janet, Katie’s mom, had a strong yearning to give back, and thought she could offer support to other families going through a similar experience.
Janet connected with a family who had just received the same diagnosis as her daughter, sharing hope and a few key points that focused on actions that had helped her. She suggested ideas such as keeping a journal, and asking questions of the medical team rather than surfing the Internet.
This passion to mentor and support others led Janet to the Families as Partners Program. In 2006 she completed training and hosted her first Pizza Break in the NICU as a Family-to-Family volunteer. This gave her the opportunity to be a resource to other families during their child’s hospitalization.
Now she hosts Family-to-Family events and schedules groups of other family volunteers too. She formalized the scheduling process, and developed a training tool to ensure that all of the family volunteers are adequately prepared.
Janet continues to strive to improve the NICU patient and family experience by participating on the NICU Experience Team (NEXT). Both Minneapolis and St. Paul campuses work collaboratively with family volunteers to enhance care with an advisory council that includes NICU alumni families and staff.
Supporting the patient and their family is at the core of patient and family-centered care. The Family-to-Family program matches experienced, trained family volunteers with families just beginning their journey due to a hospitalization or diagnosis. This peer-mentor model provides encouragement, emotional support and non-medical information in a variety of ways, including one-to-one matches, pizza breaks, and scrap booking classes.
Janet’s ongoing commitment to the NICU families has created a support network so that no family feels that they are alone on the journey with their child.
Family involvement programs at Children’s
The Families as Partners program promotes, coordinates, and supports family involvement throughout Children’s. It provides patients’ families (past and present) the opportunity to be involved in decisions and processes for how care is delivered at Children’s. Children’s staff has worked collaboratively with patients and families through these programs to provide positive change in the areas of process improvement, program and policy development, and care delivery. The Families as Partners program includes:
- Family-to-Family Program
- Family Advisory Council (FAC)
- Family Advocates Program
- Family Advisors Program
- Youth Advisory Council (YAC)