Appreciating the gift of a second chance at life is what Julie Kobayashi cherishes each day. This is the message she will share with pediatric patients, their families and the community in her role as the 2016 Children’s Miracle Network Hospitals Hawaii Champion.
Kapiolani Medical Center for Women & Children announced Julie as Kapiolani’s and Hawaii’s ambassador for 2016 in a launch ceremony held March 30 at the Waikiki Beach Marriott Resort & Spa.
The national program through Children’s Miracle Network Hospitals honors remarkable children who have triumphed despite severe medical challenges. One child from every state is selected as their state’s Champion each year. As part of her ambassadorship, Julie will travel to Washington, D.C., and Orlando, Florida, to share her story with national audiences. The 2016 Champions program is presented by Delta Airlines, Chico’s FAS, ACE Hardware and Marriott International.
“Kapiolani has been Hawaii’s only Children’s Miracle Network hospital for more than 20 years, and the money raised through this partnership helps fund many of our patient support services and programs, such as our Child Life program, chaplaincy program and transport services,” said Kapiolani CEO Martha Smith. “Julie was touched by all of these programs during her hospitalization and her follow-up care and treatment, so it’s really special that she is serving as our Champion this year.”
Julie was brought to Kapiolani when she was 11 years old. She had been experiencing flu-like symptoms, so her parents took her to her doctor, who ordered blood tests. While walking down the hall, she suddenly felt weak and dizzy. She began to see white spots and her vision became blurry. Julie was rushed to the emergency room at Kapiolani, and was met by a team of doctors, nurses and other clinical staff who quickly diagnosed her with dilated cardiomyopathy, a condition in which the heart becomes weakened and enlarged.
With her heart pumping at less than 10 percent, Julie was admitted to Kapiolani’s Pediatric Intensive Care Unit (PICU) where she was stabilized. After a series of trials, tests and medications, it was determined that she had heart failure and was in need of a heart transplant. With the nearest pediatric transplant center located on the West Coast, Kapiolani’s Transport Team of specially trained respiratory therapists and registered nurses was mobilized to transport Julie via air ambulance to the mainland, where she eventually received a heart transplant.
“Kapiolani is excellent,” said Lori Kobayashi, Julie’s mother. “From the Kapiolani Transport Team to the doctors, medical support staff and Child Life staff who made our lives so much better at a time when we didn’t know what to do. Today, we can say that there is a happy ending.”
Now 14, Julie has a fully functioning new heart and she is enjoying life as a teenager. She enjoys playing the clarinet in her high school band, lion dancing, playing video games, reading anime and drawing. She continues to receive follow-up care and regular heart health checkups at Kapiolani.
“This experience has taught me that you can achieve anything that you put your mind to,” said Julie. “You really just have to go for it.”