My name is Melissa Winger, the mother of a wonderful son who has multiple medical and developmental needs resulting from a rare and complex chromosome disorder. I look forward to sharing the lessons I have learned navigating the health care system, from the family perspective, both good and bad.
I also want to hear from you, as families, about your experiences.
At Children’s Hospitals and Clinics of Minnesota, I have been involved as a family adviser for 13 years, most of which has involved serving on the Family Advisory Council (FAC). I served as FAC chairwoman for three of those years.
I remember the first time I applied to be a FAC member and on the application was a question that asked (looking for diversity with a goal of having all families that come to Children’s represented), “What do you feel you could bring to the council?” I answered, “I am 19.” When I mailed it off, I thought there was no way they would offer me a seat on the council. Who wants to hear from a 19-year-old mom?
Well, I was wrong and they offered me a seat on the council. I have never stopped sharing my story and experiences, largely because of the positive changes that resulted.
Being a mom of a child with significant needs, Children’s became our second home — over 30 surgeries and procedures and double that of hospitalizations. I had to learn how to effectively navigate the health care system, and to be honest, I do not have it all figured out yet.
I have been able to give input on the design of the Children’s Medical Organizer, an online organizer that I use to organize my son’s records. Through the years I have been a part of many committees and projects at Children’s as the family representative. Currently I work as a Concierge at the Welcome Center on both the St. Paul and Minneapolis hospital campuses.
I look forward to sharing with you some of the things I’ve learned or wish I had known, and I want to learn from you, too. What questions do you have about Children’s that I could offer my perspective, as a mother who has spent a lot of time there with her son, on?