Meet Kaiden: 2018 Family Advocacy Day Champion

Kaiden is participating at 2018 Speak Now for Kids Family Advocacy Day from June 26-27 in Washington, D.C. During the event, Kaiden will share information about his health journey and the importance of children’s health care with members of Congress. Below is his story.

One word describes Kaiden: Warrior! At the ripe old age of 6 months, Kaiden (also lovingly known as Kai), has already endured emergency open-heart surgery, ECMO life support and pacemaker placement. Despite this challenging start, Kai has learned to thrive. He has an infectious smile, an easy-going personality and a joyful disposition.

Kai was born with mitral valve dysplasia and severe left atrial enlargement — congenital heart defects. Luckily, Kai has had the amazing team at Duke Children’s Hospital & Health Center by his side.

While his parents and medical team knew about his condition since birth, on Christmas Eve, Kai’s heart suddenly decompensated. He needed emergency open-heart surgery at 18 days old, and had to go on ECMO life support to survive.

These procedures are very difficult to overcome, especially for a newborn. But thanks to the amazing doctors and nurses at Duke Children’s, who worked around the clock to save his life, Kai beat the odds! After a 1.5 month stay in Duke's Pediatric Cardiac ICU, Kai got to go home!

While Kai’s condition improved greatly after his treatment, his medical journey will continue for the rest of his life. He requires intensive physical and occupational therapy and continues to receive anticoagulant blood draws at Duke every week. Kai will require life-long blood thinners and need multiple open-heart surgeries to repair his heart valve as he grows.

Today, Kai is a calm, connected and curious 6-month-old. He is also known for smiling at and flirting with his favorite doctors and nurses at Duke Children’s. Kai’s parents, Jenessa and Ryan, are incredibly grateful for the pediatric medical knowledge that ultimately saved their son.  “Without current research and development of heart valves for kids (especially neonates), Kai would not be alive” they note.


Join us in welcoming Kai to 2018 Family Advocacy Day!

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