Medicaid Matters for Kids Mondays - Charlie

Speak Now for Kids is celebrating Medicaid Matters for Kids Mondays with posts highlighting the importance of Medicaid in children’s access to health care. This week, we spoke with 2018 Family Advocacy Day alum Charlie’s mom, Shelby, to learn how Medicaid helps her family.

Charlie is a 3-year-old little boy filled with endless amounts of energy, laughter and silly comments. Under his sweet smile, he holds a long list of diagnoses and requires eight specialists for his conditions.

At two months old, Charlie was diagnosed with two congenital heart conditions — mitral stenosis and mitral regurgitation — and pulmonary hypertension, a type of high blood pressure that affects the arteries the lungs and the right side of the heart. Within four months, Charlie had three unscheduled open heart surgeries at Children’s Minnesota to repair, replace and fix his mitral valve. The surgeries he received at Children’s Minnesota saved his life.

Charlie’s stays at Children’s didn’t end after that — he has had ongoing frequent hospitalizations. Most recently, this brave boy spent Thanksgiving in the hospital for atrial flutters. He is currently waiting to schedule his next open heart surgery in the next few months.

Charlie’s medical needs often take priority in our family. Typically, he has at least one appointment a week. We have to “expect the unexpected” when it comes to Charlie. The daily ins and outs of raising a medically complex child can be stressful as parents. We often miss holidays, family events, work, and other plans due to hospitalizations, illness, or just attempts to minimize his exposure to germs. Charlie’s big sister, Mya, often deals with anxiety as a result of his medical complexities. She has an impressive understanding of his care, diagnoses, and the reality of his life.

Even though Charlie has private insurance, he is also covered by Medicaid. Having this coverage for his medications, hospitalizations, miles travelled to and from appointments, and other miscellaneous expenses has made such a difference for us. We’re able to continue to provide both of our children a warm and happy home. It is reassuring to know that we do not have to compromise his cares because of medical expenses.

Because Children’s Minnesota has given so much to us, I have found it most rewarding to give back as a member of the Families as Partners Program and the Family Advisory Council. I have served in various roles as a family presenter to share our story with influential groups. This month, I’ll start my new role on the Family Advisory Council as the Vice Chair. I enjoy every moment I spend volunteering as a member of Families as Partners.  

In June, our family went to Washington, D.C. and represented Children’s Minnesota at 2018 Speak Now for Kids’ Family Advocacy Day. In October, prior to the election, I was honored to have the opportunity to speak on behalf of our state’s children with the gubernatorial candidates for Minnesota. During both “Conversations with the Candidates” sessions the room sat quiet, while I shared our pain, joys, and gratitude for Medicaid and the lifesaving care we received at Children’s Minnesota. I left those days feeling heard, and I received endless thanks and compliments from those in attendance.


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