Council Gives Mother Chance to Improve Patient and Family Experience for Years to Come

On the day of her baby shower, Melissa Sisler went into labor with her son, Courtland, at 31 weeks pregnant. Both surprised and worried, Sisler immediately went to MU Health Care’s Family Birth Center. After three hours of pushing, her son wasn’t moving in the birth canal and Sisler was exhausted. She and her doctor decided it was time to pursue a C-section. As a nurse, Sisler knew premature babies had higher risks for complications but his APGAR signs were good.

Because he was born prematurely, he needed help breathing and was admitted to the neonatal intensive care unit (NICU). After about 24 hours Courtland’s doctors and nurses noticed something wasn’t right with Courtland’s left arm and leg, and an MRI showed he had suffered a stroke in the right side of his brain. Due to the stroke, his early birth, and other medical needs, he spent 58 days in the NICU.

Now 6, Courtland lives with mild cerebral palsy that affects the left side of his body as a result of his stroke but is otherwise a healthy boy who welcomed a new baby sister, India, in March 2020. She was born at 34 weeks and stayed in the NICU for 14 days since she was less than 35 weeks and needed help breathing, too.

A year after Courtland was born, Sisler was contacted by his NICU social worker to be part of the Patient and Family Advisory Council (PFAC). The council meets monthly with MU Health Care staff, nurses and doctors to discuss areas of improvement for women’s and children’s care.

Sisler shares why PFAC is important and encourages other families to consider applying.

Why did you join PFAC?

My son had been in the NICU the year prior, and his social worker called me and asked if I would be interested in applying. This gave me a separate safe place to voice my concerns and opinions with other parents and patients. Not only are we helping to make MU Health Care the best for the patients and their families — both in the care it provides and the environment for our children, other patients and families — but it’s almost a support group as well. I am one of the founding members.

I feel like we have addressed so much over the years! Some changes are small while some are bigger and many are ongoing. There is so much we do, but we can be limited to our own experiences and what the staff need assistance with.

What changes has the council made while you’ve been a part of it?

Some of the projects we’ve worked and are currently working on include:

• Improving communication between the patient and family and their provider at the Pediatric Specialty Clinic as well as daily rounding routines in the hospital
• Developing a map of the hospital and surrounding area as a guide for families who aren’t familiar with local hotels, parks and restaurants
• Developing a book to help improve the inpatient admission experience by providing explanations of procedures, what to expect, what to bring, what support is available in the hospital, policies, etc.
• Sharing feedback on projects within the hospital, such as educating parents on what conditions and treatments their child may be receiving and translating it into layman’s terms
• Providing feedback on the transition of child to adult care as patients phase out of pediatrics, including adding Hoyer lifts in exam rooms and adult-sized changing tables

What kind of feedback do you share?

I most recently gave my input and feedback as a mom who had two kids in the NICU when the current NICU was being designed. I let the designers know what, as a parent, would make my stay easier. Questions I addressed included:

• What did I need in the room?
• What needed to be available in the waiting room?
• Where did I want my pumping equipment?
• What did I need to store my belongings or my child's belongings? Specifically, it was important to me to have a few shelves where I could display gifts and books, and I needed a place to keep my baby’s clothing.
• Where did I want the chair to be when I would sit next to my baby — the head of crib or at the foot?

Why should someone consider applying to PFAC?

We rely on new members to bring fresh ideas and concerns to the table so we can continue to make progress and changes. Now that I’ve had my second baby, I feel a little refreshed as we are being seen in clinic visits again. Our NICU experience was very different this time, but it was good and, luckily, very short.

We want other families and patients to want to make MU Health Care the best it can be and provide family- and patient-focused feedback. We are working on giving our opinions on how MU Health Care’s brand-new Children’s Hospital and Birthing Center will look when it opens in 2024. We have seen different design options and have provided feedback on what we think is important to have in the rooms and the waiting areas. Some examples include what do we like or dislike at the current hospital location and what do we want to avoid in the new setting?

We are also interested in diversifying our council. The only way to improve care and make it the best it can be is to take the experiences, opinions and concerns of patients and families to make improvements. PFAC gives us a voice that maybe we thought we didn't have. It's one thing to write your issues on a patient experience survey, but it’s an entirely different experience to discuss them and see that you can make changes. It is very satisfying!