Erin Ward's son, William, was born with a rare form of muscular dystrophy that has resulted in frequent—and lengthy—
visits to Children's Hospital Boston throughout his life. Spending so much time at William's side, Ward gained a lot of insight into how to make the hospital experience better for patients and families. So she participated in the creation of the Coordinated Care Service (CCS) Parent Advisory Board. Her involvement in hospital programs kept growing until last year, when Ward officially joined the hospital staff as Children's Family Initiatives Coordinator in the Center for Families. Now Ward shares her own experiences with visiting families, other employees and the health care community. Here, she tells Children's News about how her experience helped her improve care for other hospital families.
"Walking through the front doors of the hospital in the spring of 2005, a new Children's employee ID badge in hand, was a "full circle" life experience for me.
For five years, I entered these doors as a mother, often wearing the yellow parent ID tag. Although I was a visitor, I was such a frequent one that I was sometimes mistaken for an employee by families seeking directions.
My relationship with Children's began the day my son was born, in 2001. William's an incredibly social boy, full of joy and exuberance, which might explain his rush to meet us—he was born nine weeks prematurely. After a long stay in the NICU and two successful procedures—a g-tube to feed him and a tracheostomy (an opening in his neck into his trachea) to help him breathe—William was finally allowed to go home. He was 4 months old. Since then, he has been closely followed by CCS on Fegan 10 and in the pulmonary clinic for vent-dependent patients on Farley 4.
My sudden and intense relationship with Children's proved to be one that would evolve into a partnership over time. Early on, I was a great learner—learning about my son, his diagnosis and the hospital. But soon, I became an active partner in his care. As I'd find out, the hospital's focus on partnering with family members to enhance a patient's care is an invaluable part of any child's health care plan.
The journey of caring for my son and my desire to improve the quality of care for children with special health needs led me to start working with Children's professionally. During this past year, I worked with the CCS Medical Specialty Program to facilitate the development of a new departmental Parent Advisory Board. I also promoted parent-professional partnerships as the CCS family liaison.
These experiences led me to my current role at the Center for Families, where I coordinate the Family Initiatives programs, including the Hospital Family Advisory Committee and the Family Faculty program. The Family Advisory Committee invites family members and hospital staff to come together quarterly to help incorporate families into hospital programming and policies. I also develop ways to invite other hospital departments to follow this model in developing family-led advisory subcommittees. Several departments have already expressed an interest in building on the CCS model, and I'm looking forward to consulting with them.
William, who's now almost 6 years old, continues to teach me about living with a rare disease, and I get to share what I've learned with the hospital community. One of my favorite job responsibilities is speaking at new hire orientations. It's a great chance for new employees to hear directly from a parent the role Children's has played in the life of a child who is sick.
I'm very grateful that Children's recognizes the importance of partnering with patients and families. The fact that my job even exists exemplifies the hospital's willingness to work hand in hand with families and move forward together, enhancing the care and safety of our children.
So now, on most of my visits to the hospital, I walk through the doors as an employee. But behind my ID badge, I've got a picture of my son. Not only is he my inspiration, having brought me to this place of extraordinary care for children and families, he's also a reminder of why we are all here.