Kami Shares her Congenital Heart Defect Journey, Reflects on Her “Home”

In honor of Congenital Heart Defect (CHD) Awareness Week, 26-year-old Kami Sutton wanted to share her journey that began at Seattle Children’s the day she was born.

26-year-old Kami Sutton
26-year-old Kami Sutton

Seattle Children’s is my home. From the previously trademark blue bubble letters, the giraffes (which were recently replaced in the remodel), trains and Mickey Mouse – it is home. It is full of the people who I have trusted with my life since before I can even remember.

I was transferred to Seattle Children’s from a local hospital on Sept. 21, 1988, at only four hours old after being delivered via emergency C-section. I was blue and unable to breathe on my own. My parents were told I most likely would not survive the 30 minute trip down I-5 to the hospital.

I underwent my first procedure at 12 hours old where doctors discovered a severe congenital heart defect. My diagnosis: congenitally corrected transposition of the great arteries with dextrocardia, a ventricular septal defect and pulmonary atresia. It’s a mouthful, but in basic terms this means my pumping chambers are reversed, my heart is on the right side of my chest instead of the left, I had a hole between two chambers of my heart and I was born without the connection between my heart and lungs.

Since that day I have undergone 19 heart operations along with three dental procedures to prepare for a possible heart transplant, and two spinal surgeries after I developed scoliosis or a curvature in my spine.

Throughout my journey at Seattle Children’s until now, I have been lucky to benefit from the latest research and advancements for treating heart defects available in the field. It’s this dedication to research, the advancement of technology and the hospital’s dedication to not only the patients, but also to their families, that has made me so passionate for Seattle Children’s.

Kami Sutton just 2 days old in the Intensive Care Unit at Seattle Children's
Kami Sutton just 2 days old in the Intensive Care Unit at Seattle Children’s

I have been honored since 1997 to represent the thousands of patients treated at Seattle Children’s on the KOMO-TV Miracle Maker’s telethon, Miracle Season and KISS 106.1 Radiothon and by working with the SOVREN and Team Seattle Guilds; both of which use my passion for auto racing to raise funds for Seattle Children’s. The SOVREN and Team Seattle Guilds have raised millions for the hospital over the years.

A transition to adult care and surgery ahead

While much of my life has been spent at Seattle Children’s, now as an adult, I am officially transitioning to the University of Washington Medical Center (UW Medical Center) this week. After 26 years of care by only a single hospital and some of the same people since day one, you can imagine the difficulty I am having with the transition. However, the team there is amazing and has been very welcoming.

Since late last year, my doctors at Seattle Children’s and UW Medical Center have been collaborating on my next treatment plan where they are attempting to find a way to fix my heart without the transplant I have been awaiting for nearly five years.

Our first attempt is going to be something out of science fiction. Dr. Stephen Seslar, my electrophysiologist who works at Seattle Children’s and UW Medical Center, is going to be using a 3D-printed model of my actual heart to practice placing a lead wire through my complex anatomy for a new pacemaker. The new pacemaker will control both sides of my heart at once in hopes of increasing my heart function and quality of life!

Dr. Seslar has been using these 3D-printed heart models to prepare for surgeries at both Seattle Children’s and UW Medical Center and I’m so excited to benefit from yet another research advancement. You can actually see him practicing on my heart model in December at Seattle Children’s in KING 5’s, “Hearts Printed on a Copy Machine!”

Giving back

Kami on a trip to Daytona with Team Seattle in 2002
Kami Sutton in Daytona with Team Seattle in 2000

As I continue treatment in the adult world, I will always be a Seattle Children’s kid at heart. I knew at a young age that I wanted to do everything I could to give back to the amazing “Miracle House,” and even though my time as a patient is finished, I am not giving up my dedication to this cause. I will continue representing the hospital and sharing my story – a story that shows that because of Seattle Children’s I have been able to graduate high school, achieve my dream of being a University of Washington Husky and now I am able to work full time at the American Heart Association, spreading awareness and raising money for CHD research that is helping kids like me.

I will also continue to keep the positive attitude that was instilled in me over my 26 years at the hospital – the attitude that will help me get through whatever the future holds. And no matter what, Seattle Children’s will always be my home, and the staff, my family.

Seattle Children’s Cardiac Intensive Care Unit (CICU) is named in Kami’s honor because of Team Seattle’s fundraising efforts and Kami’s own work as a spokesperson and fundraiser for the guild.

Stay tuned to read more about Kami’s story and Dr. Seslar’s 3D-printed heart models on the blog next week.

More than 5,000 children depend on Seattle Children’s Heart Center each year. If you’d like to help patients like Kami, visit our donation page and specify that you’d like your gift go to the Heart Center Fund. You can also learn more about how guilds make a difference.