Will Kohn photo in PICU
 

Six-year-old Will Kohn was born with hypoplastic left heart syndrome, a birth defect in which the left side of the heart—the area that pumps oxygen-rich blood to the rest of the body—is underdeveloped.

Hypoplastic left heart syndrome is rare. Left untreated, most newborn babies with this congenital heart defect survive only a few days.

Will’s parents, Chris and Meghan Kohn of Bettendorf, Iowa, were made aware of their son’s condition during Meghan’s pregnancy—ultrasounds had detected the heart abnormality. When Will was born at University of Iowa Stead Family Children’s Hospital in November 2010, the Kohns were able to hold their newborn son briefly before he was taken to the Neonatal Intensive Care Unit for life-saving medications and around-the-clock monitoring and care.

At 6 days old, Will had heart open-heart surgery, the first of three operations in eight months to correct the defect and ultimately establish normal blood flow in and out of his heart. During this time, Will also had a G-tube (gastrostomy tube, which delivers food directly into the stomach) placement as well as numerous heart catheterization procedures to ensure proper blood flow.

In fall 2013, during a catheterization in preparation for Will’s fourth, and presumably final, heart surgery, UI Stead Family Children’s Hospital doctors determined that Will’s heart was simply too weak to withstand another operation. A heart transplant was his best option.

Will was placed on the heart transplant list in July 2014. For the Kohn family, the past 18 months have included both health successes and setbacks. Since early January 2017, Will has remained in the Pediatric Intensive Care Unit at UI Stead Family Children’s Hospital for continuous care, medications, and monitoring.

Through it all, Will remains a happy young boy who loves Legos® and Xbox®. He also remains resilient as he and his family await the news of a donor heart. Will is near the top of the transplant list, so the call could come at any time.

“We know we will get through this along with everything else,” Will's parents posted on their “Team Will” Facebook page. “Hopefully the call comes soon and we can get used to our new normal with Will’s new heart.”

*Editor’s note: Will was the first patient to move into the new University of Iowa Stead Family Children's Hospital on Feb. 25, 2017. He received the gift of a new heart on Sept. 14, 2017 and was able to return home in December. In January 2018, Will was diagnosed with large B-cell lymphoma. Through it all, Will remained a resilient young boy who inspired those around him.

In memory of Will Kohn.
Nov. 12, 2010 – Jan. 27, 2018.

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