My child advocacy journey: Working together to make a difference

Children's Advocacy NetworkAs a cardiac nurse, I cared for patients one at a time as they went through heart surgery. My role was to educate and support the family, and keep the cardiac teams informed about patients in the surgical pathway.

In time, I wanted to be able to impact the care these patients received before, during and after their hospital stay. That’s when I took a leadership role in the heart program at Children’s Hospital of Wisconsin. It has been very fulfilling to help steer the program with a view on our number 1 priority: our patients and their families.

I have made the same journey with advocacy. One small voice promoting change to improve care for our children does not make a ripple — even in a puddle. But many people working together can improve care, locally, regionally and nationally.

Babies arrive at our hospital with late detection of critical heart disease. I have witnessed, firsthand, the harm to these little children because no one found the problem until they were gravely ill in our emergency room. It’s hard to see these kids struggle through a longer recovery and cope with lifelong problems when this could have been avoided through early diagnosis. Together, we can help all babies get properly screened via pulse oximetry checks at birth to help prevent this from happening.

Without an organized effort like Children’s Advocacy Network, legislation like pulse oximetry screenings for newborns to rule out critical heart disease would never move forward.

Let’s work together to make a difference!

As a C.A.N. advocate, I receive emails about important issues and it is up to me to contact my elected official. It’s easy to sign up and only takes a couple of minutes. Add your voice today at www.chw.org/CANSIGNUP.

Maryanne Kessel, MBA, RN- Maryanne Kessel, MBA, RN, executive director, Herma Heart Center, Children’s Hospital of Wisconsin

Herma Heart Center at Children’s Hospital of Wisconsin is one of the nation’s top programs for medical and surgical treatment of congenital heart defects and heart disease in children.

Comments

My child advocacy journey: Working together to make a difference — 4 Comments

  1. Thank you MaryAnn for your commitment to our heart children. We have experienced the tremendous care CHW offers for the past the 13 years. Tomorrow, my son Sam (born with dTGA), will speak with state representatives about the wonderful quality of life he’s experienced. We know that without pulse oximetry, his defect may not have been picked up as quickly as it was. We are thankful Sam can now advocate for others.

  2. I have too experienced Children’s Hospital in Milwaukee. My daughter was born on 2-13-13 and 6 days later was flighted to Milwaukee as she has a condition called coractation of the aorata. i do not have enoughs words for all the staff at the hospital. if i did not have the motherly instinct that something was wrong, i wouldnt have my daughter today. she is now 3 months old and a joy to have in my life. Thank you CHW!!!

  3. Thank you Maryanne and the entire heart team at Childrens Hospital for giving of your time and talents so that children like our daughter have the best care and technology available to them. We have been forever changed by this journey. We will continue to advocate for pulse oximetry until all babies are tested. The hardest part of all of this knowing that a simple pusle ox on our baby would have made all the difference. Rayna survived TAPVR until 4 1/2 years old undetected and this simple little test could have helped her. We know she is the exception to the rule and will continue to advocate for these kids and thier families until all babies are pulse ox monitered. THANK YOU THANK YOU CHW and OUR HEART TEAM!!!!! We know the memories we get to create as a family are a gift that you have given us and it will never be taken for granted.

  4. It is so good to hear from parents about the precious life stories they have with their children who have required heart care! We see them in the hospital when they are at their sickest point. To know that they go home and get on with living a wonderful life makes coming to work a pure joy!! Thank you all for sharing your stories.