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.









picture disc.

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.

3 comments

  1. Kristi Brummels says:

    Love this story! Congratulations on your adorable baby boy!

  2. Jackie Nelson says:

    So happy to hear your baby is healthy and you are doing well. Beautiful family! You give us hope for our little one who is due to be born June 26th, who was diagnosed with TGA at our 20 week ultrasound. I have never been more scared in my life, but I know that I have great care here at Nebraska Medicine with my wonderful OB, Karen Carlson, and the heart team at Childrens, Dr. Winter and Dr. Hammel. I know our future holds so many unknowns but I am so lucky to have Nebraska Medicine and Childrens, not only for my care team, but UNMC as an employer. Ironically, although not Nebraska, we live in, Minden, IA. Best wishes to you and your family! <3 - Jackie

  3. Tami Shellberg says:

    So glad to hear about your beautiful baby boy. So very precious. My daughter Jackie put your story up on her FB page for us to read. There baby has the same transposition of the great main arteries and is Due in June. I've cried a lot of tears but said it is in Gods hands and the wonderful Drs at UNMC and Children's Hospital. Jackie and Brandon have two beautiful sons whom I love and adore and can't wait to hold and cuddle the new addition to the family. God Bless you all

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