Eight-year-old Josie’s experience as a patient in the Nemours Cardiac Center has been, in a word, extraordinary. Josie was admitted to the Cardiac Center in October 2010, when the left side of her heart stopped functioning. She went into cardiac arrest twice, underwent ECMO (a form of cardiopulmonary bypass) and implantation of a mechanical pump, the Berlin Heart, to support her while she waited for a donor heart and transplant surgery. She and her family could not have foreseen how their patience and endurance would be tested.
Josie survived 11 months, the longest, on the Berlin Heart of any patient treated in Nemours Cardiac Center. In fact, according to Dr. Christian Pizarro, the Cardiac Center’s director, Josie is among fewer than 10 children in North America to have survived on the device for that long. She lived for nearly a year in the cardiac intensive care unit (CICU), seldom able to venture off the floor, and even less frequently, go outdoors, due to her dependence on the mechanical pump that always traveled with her. Her family visited daily, working hard to make Josie’s corner of the CICU comfortable and keep her spirits up. Incredibly, Josie was offered not one but three donor hearts which were either unsuitable or not possible to transplant, before finally receiving the fourth, life-saving offer in September 2011.
Josie was transplanted on Sept. 9, 2011, the day after she and her father, Joe, were interviewed for the Help Our Kids Radiothon, a live, on-the-air fundraising event that featured compelling stories of children treated at Nemours. As thousands listened to Josie and her dad on the radio, Josie became a local celebrity, and her legion of well-wishers grew.
The transplant surgery itself was described by Dr. Pizarro as “moderately challenging.” More challenging were the many complications that arose early in Josie’s stay, as well as the physical and emotional tolls of waiting — for the right time, the right circumstances and the right donor heart to become available. What sustained Josie’s family through nearly a year of waiting was faith: faith in each other, faith in Josie’s care team, and faith in the kindness and prayers of family, friends, and people who heard of Josie’s ordeal.
“There were ups and downs to be sure,” said Joe. “We knew we were in the best hands, and we stayed optimistic even through the disappointment of three offers of donor hearts that for one reason or another did not work out for Josie. We never lost faith because we felt confident in Dr. Pizarro and the entire team at Nemours. They were our champions and they came through for Josie as we knew they would.”
“We will always consider them family. We felt honored to live among such caring people for a year of Josie’s life,” adds Josie’s mother, Marge.
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