Newborn Intensive Care Parent Coordinator: Brenda Miller
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Brenda Miller |
Brenda Miller's daughter, Emily, was born prematurely at 26+ weeks, weighing 1 pound 5 ounces. Emily spent the first three months of her life in the Holden Neonatal Intensive Care Unit (NICU) in C.S. Mott Children's Hospital, University of Michigan Health System, Ann Arbor, Michigan. Emily, now 12, is a petite and physically robust softball player.
Brenda received invaluable support from others while her daughter was a patient in the Holden Neonatal Intensive Care Unit. She remembers that during a weekly family meeting one family told about their stay in the Unit. Their son seemed to be very similar to Emily. Brenda credits this experience -- of hearing this family's story and seeing their thriving 3 year old son -- with helping her to be a better mother during Emily's stay in the Unit, helping her not to despair, and spurring her to eventually work in the hospital. Families of "graduates" of the Unit showed Brenda the potential for her child to grow and have a productive life, and resulted in Brenda's providing support to other families.
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Emily Slomovits |
In 1998, Brenda became the first volunteer Parent Representative of the newly established Holden Neonatal Intensive Care Unit Family-Centered Care Committee (FCC). Since January 2006, Brenda and a staff nurse have co-chaired the committee. Initially, Brenda worked on discrete projects such as writing the Committee's mission statement and goals, instituting the Parent Choice Visiting Plan which empowered parents to select who could or could not visit their baby in the Unit, and instituting -- at regular time intervals -- meetings for caregivers and families rather than waiting for a medical crisis to occur.
Ultimately, as a part of the FCC Committee, Brenda was able to effect major change. For example, the Neonatal Intensive Care Unit switched from an individual nurse model (moving babies from nurse to nurse based on level of care needs), to team nursing. Nurses are now divided into two teams, providing more consistency of care and improved patient safety, decreasing sensory overload to babies, and requiring families to interact with fewer unfamiliar individuals. As a result of parent Family Faculty members telling their stories to the entire staff, parents debunked the myth that they would be too uncomfortable with having their baby next to other babies at different levels of acuity or severity of illnesses. The parents' point of view was instrumental in effecting this change.
In 2003, Brenda joined the staff of the Holden Neonatal Intensive Care Unit as it's first paid Parent Coordinator. She currently works 24 hours a week, two days in the hospital and the rest from home. Rose Ramey, the Unit's Clinical Nurse Manager, provides invaluable supervision, support and mentoring. Brenda's job description, has evolved over time.
Brenda is engaged in a multitude of family-driven initiatives to benefit parents, newborns, and graduates of the Unit. She does a lot of juggling: meeting with families, sustaining the existing programs, and implementing new ones. Brenda's typical day includes being present in the Unit so that families can meet with her as their needs arise. Current projects include:
- Family Faculty Program, in which trained Family Faculty members share their family stories with medical students and residents;
- Scrapbook & Sandwiches Program provides an opportunity for families to have lunch and share pictures and stories of their infants;
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Each family is given supplies and a new scrapbook to fill. Sandwiches are served, as parents share stories and photos with each other. |
Special cart for supplies used at the Scrapbooks & Sandwiches meeting. |
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Annual reunion of graduates, held the same Sunday every year at a large park. |
- Annual Holden Graduate Family Reunion;
- Family and Staff Massage Program;
- Parent Mentor Program;
- Holden Neonatal Intensive Care Unit Virtual Tour project;
- Family Library Cart;
- Recruitment of additional families to serve as members of various hospital committees; and
- Web-site and electronic newsletter for Holden Neonatal Intensive Care Unit graduates.
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Special Library Cart on wheels, stocks books and videos, including textbooks for parents and board books for reading to babies. |
The semi-annual "Holden Grads" Newsletter, developed by parents, is sent to graduates who request it. |
Brenda also serves on the C.S. Mott Children's Hospital Family-Centered Care Committee. Her membership on several Children's and Women's New Hospital Design committees encouraged input from patients and families to ensure a family-centered environment within the new $500M+ facility. For more information on the design, see http://www.med.umich.edu/opm/newspage/2006/mott.htm.
The presence of a paid parent staff member has changed attitudes towards families in the Holden Neonatal Intensive Care Unit. Brenda's position gives parents a voice in the NICU, and legitimizes the concept of the parent as a part of the team. In committee meetings Brenda takes the broad perspective, holding onto the objective to move the initiative forward, while representing the parents. She tries to listen, hear, and understand the staff's perspective as well as the families' perspective, which she believes enhances her credibility.
Brenda credits her attendance at the Institute for Family-Centered Care's 2003 Seminar as inspiring her to expand the concept of what could be achieved by Parent Coordinators. She returned with lots of ideas, and continues to pursue a multitude of initiatives to make the lives of families and patients easier.
Brenda finds her work with the Holden Neonatal Intensive Care Unit personally rewarding, and believes that her education and past professional experiences have led her to this work. Daily interactions with others confirm Brenda's feelings that what she does "makes a difference" and she envisions continuing until she retires. An artist, Brenda finds that being the Parent Coordinator gives her different and unexpected ways to be creative. She pours her passion into activities that result in outcomes that are valuable to her and others. She believes the possibilities for creating positive change are without limit.
Brenda earned a fine arts degree from Eastern Michigan University. For many years, Brenda designed a magazine for the National Association for Gifted Children. Currently, she illustrates covers for a local publication. In addition to her art, Brenda loves to read, garden, bike, canoe, learn, knit, listen to her daughter play violin, and put together jigsaw puzzles that take months to complete, one tiny piece at a time. One of her greatest pleasures is camping with her husband and daughter.