Giving a voice to patients and families

Penni Newport, Nancy Cutler and Scott Newport surround Scott and Penni's son Evan.

I really embrace the philosophy of patent and family centered care here at the C.S. Mott Children’s Hospital.  Back in 2002, I experienced the reality of exceptional medicine first hand before it even had an official name. My son spent the first ten months of his life in the hospital. That is when I learned medicine is not an exact science.  It also revolves around positive relationships with a dash of emotion.

I’ll never forget when an intensive care unit (ICU) nurse allowed me to push a silence/reset button for the first time to extinguish the beeping. Evan was having difficulty breathing and the ventilator alarm kept going off.  Finally, not only did I feel like I had some worth as a father but I also felt like I passed my first semester in medical school. You see, the day before a cardiac fellow showed me how the heart worked by drawing a diagram on hospital stationary, an unfolded, paper towel.

Last year I was able to continue my education further by attending the national conference for patient and family centered care in Dallas, Texas as a representative of Mott Children’s Hospital. The week long event was awesome, as I was able to meet other parents who shared my passion for family centered care. I even started to become a little proud when other national institutions were asking me how we did things at Mott. I realized then that we were much further along on our patient and family centered care initiative then some of the others. I also found out some of them were ahead of us and there were things we could – and have – learned from them.

Each day involved a full schedule with plenty of sessions and presentation choices to meet everyone’s particular interests. We even had to work over our lunch hour by meeting in small groups.   Actually, even those were kinda fun as we were able to be a bit informal.

As the week went on, I heard folks speak from Cincinnati’s Children’s Hospital, Children’s Hospital of Philadelphia, Dana-Farber and even our own Kelly Parent from Mott Children’s Hospital. The variety of information being shared was informative and inspiring. I guess the best part of the conference was being able to personally meet professionals and hospital volunteers from all over the country who shared my passion. I also learned that Patient and Family Centered Care is the way to the future for providing exceptional care to the sick, something our home has always done. But know we can even do it better with a committed formal initiative.

On the last day of the conference, our small lunch groups were challenged to come up on stage and demonstrate patient and family centered care concepts creatively. Our group received a huge applause as we shared our Mott story of HOPE: “Helping Our Patients Everyday.”  If you’re not yet familiar with the HOPE bunny, Mott now presents an annual award, named after my son Evan, for staff or volunteers.

If you’re a parent who is inspired by the impact patient and family centered care can have for other families and children, I highly recommend you consider whether you would like to be a representative at an upcoming patient and family centered care conference.

Scott Newport is a member of the Mott Patient & Family Advisory Committee.  He and his wife Penni are parents to Noah and Evan, who lost his battle with Noonan syndrome, a genetic disease that causes heart defects and other physical problems.

  • Learn more about how you can represent Mott at an upcoming Patient & Family Centered Care conference.
  • Learn more about Patient & Family Centered Care at Mott and how you can get involved.
  • Learn more about the Evan Newport HOPE Awards at Mott.
  • Learn more about Scott and his family.