Heart Walk: A patient’s story

This blog was written by Sarah Hawthorne, who was diagnosed with transposition of the great arteries (TGA) and congestive heart failure. Hawthorne is one of the patients who will be profiled on signage along the route of Saturday’s American Heart Association Heart Walk. (See sidebar for details on the event.)

May 22, 2016, was a day that changed my life forever. I gave birth to a healthy, 7 lb., 7 oz. baby boy at Nebraska Medicine — Nebraska Medical Center.

Sarah Hawthorne underwent open-heart surgery eight months after birth

Thirty-one years earlier, I had been airlifted to that same hospital because I was born with a congenital heart defect. Little did my family know then how much the Pediatric and Adult Congenital Heart Disease (ACHD) teams would become a part of our family.

I was born in the small town of Minden in central Nebraska. The physician that delivered me could tell that something wasn’t quite right. He had me transported to a hospital in Kearney, Neb., where they decided to airlift me to Omaha. It was there that I was diagnosed with transposition of the great arteries (TGA) — a serious but rare heart defect.

I had open-heart surgery eight months later, and now, as a parent, I am only somewhat able to imagine how incredibly hard that must have been for my parents. Thankfully, everything went well, and I was able to live a fairly normal life as an energetic, active child.

When I was 7 years old, I went into congestive heart failure and was once again sent to Omaha. This time, at Children’s Hospital & Medical Center, I was given a pacemaker and began my journey with pediatric cardiologist John Kugler, M.D. Since then, I have had two more pacemakers, several heart catheterizations and another open-heart surgery in 2015.

My pregnancy further added to my team. I was under the care of Nebraska Medicine cardiologist Shane Tsai, M.D., and the maternal-fetal medicine specialists at the med center. I moved from Kearney to Omaha for my last month of pregnancy to ensure that the delivery went smoothly.

On May 22, our baby boy was born healthy and without any heart problems that I could have possibly passed on. Since then, I have continued to see Dr. Tsai and the ACHD team.

What the medical facts don’t illustrate, though, are the relationships that have formed over the years with our doctors and nurses at Children’s and Nebraska Medicine. It’s amazing how Dr. Kugler remembered so much about me even when he was only seeing me once a year.

Toward the end of my 20s and early 30s, I developed some arrhythmias that required more frequent appointments. The interest the doctors and nurses took in my life and family was unnecessary, and yet always made me feel loved and cared for.

Dr. Kugler and his nurse, Kris Houston, even drove three hours to attend my wedding, and when we had our baby at the med center, Kris came to the hospital to visit. As I transition to the ACHD team, I know those relationships will develop into trusting, caring and loving relationships as well. This, to me, is what sets these two teams apart from everyone else. They are very knowledgeable about my heart condition and take great care of me medically — all while making me feel extremely important to them as a person.

On top of all of this, they helped me achieve something I only dreamt of for many years — becoming a mother. And for that, I will be eternally grateful to the pediatric and ACHD teams.