Alexavier Zipp walked on stage at West Creek High School in Tennessee on May 28 to celebrate the coronation of so many milestones, proving that no obstacle, mentally or physically, could stand in his way.
The 21-year-old was born prematurely at about 35 weeks in Fort Irwin, California. His mother, Luann Zipp, says when she first saw him, she told doctors she suspected he had Down syndrome. This condition affects chromosomes and can eventually cause mental and physical challenges and developmental delays. But doctors at Fort Irwin disagreed with her assessment.
Alex stayed in Fort Irwin just four days before he needed to be flown to the Neonatal Intensive Care Unit at Loma Linda University Children’s Hospital for intensive treatment after showing signs of circulatory problems, where he had been spending nearly two months.
“His little hands and feet were turning purple, so we knew something was wrong,” Zip says. “We certainly got to know Loma Linda, and genetic tests confirmed Alex had Down syndrome.”
The test also showed a serious heart condition in the infant. Alex was born with an atrioventricular canal defect – a hole in the wall between his heart’s chambers and faulty heart valves.
The smallest pacemaker in the world
At the end of April 2001, the Zepp family returned to the Children’s Hospital for Alex’s heart operations. Leonard Bailey, MD, a world-renowned cardiac surgeon, has performed Alex’s multiple surgeries. Upon completion of the first surgery, Billy told Zip that her son would be dependent on a pacemaker at 100% for the rest of his life.
What Zipp didn’t realize until after his second surgery was that this wasn’t an ordinary procedure; Her son was receiving what was then the world’s smallest pacemaker. Alex underwent the operation on May 3, 2001. He was the first patient in the United States to receive a pacemaker after it was approved by the Food and Drug Administration. The device was about 40% smaller than a standard pacemaker and was roughly the size of two quarters stacked together, weighing 12.8 grams.
Zeb went through many emotions very quickly, with an overwhelming amount of information that she and her family must process. She says, “I thought, ‘Oh my God, what are you driving me into?'” ‘But at the same time, I thought, ‘Lord, others have gone through it before me–I am not walking into the unknown.’
Since getting his first pacemaker, Alex has moved across the country with his family, going to several hospitals and receiving several replacement defibrillators. Zeb says her son is now a professional in operating on him. She explains that his heart has roughly four normal beats per minute, and he will still need replacements throughout his life as each device runs out.
Overcoming persistent challenges
Aside from his heart’s medical challenges, he has long faced criticism for having what she says is low-functioning Down syndrome. At one point, Zeb was told that she should buy a plot of land for her son’s cemetery instead of life insurance because he “would not live long”. Alex constantly proves the naysayers wrong. Zeb says that despite his limited vocabulary, his communication skills improved during his time in high school. She encourages others not to underestimate or minimize a child with special needs, but rather to “allow them to do their own things.” Alex has no problems expressing his feelings when he’s at home. Zeb describes him as silly and flirtatious. Before the pandemic, he ranked first in the state’s Special Olympics bowling alley.
Although Alex’s next immediate steps are still somewhat unknown, Zipp hopes to find an adult tutorial to continue his educational journey.
Zeb says it was unbelievable watching Alex and his daughter Diviana graduate together, their classmates cheering, and their friends being surrounded. But she does wish Billy—who died in 2019—had seen Alex’s graduation, too. “I want to thank him for his time and for the care my son received,” she says. “Without her, this master would not have been reached.”
Excellence in pediatric heart care
Anis Razzouk, MD, chief of cardiothoracic surgery and a fellow of Dr. Bailey for many years, says Children’s Hospital continues Dr. Bailey’s legacy of providing modern heart care to hundreds of children like Alex.
“Alexavir started his life with complex congenital heart disease that was complicated early on by respiratory failure and renal dysfunction,” Razzouk says. “His 21 years of survival and the good quality of life now is a tribute to the love and determination of his family and the healing power of the Almighty. The surgical intervention performed by Dr. Bailey and the advances in technology have given him a chance for a better life.”
For two years in a row, Loma Linda University Children’s Hospital has been proudly recognized as the Best Children’s Hospital for Cardiology and Cardiac Surgery by US News & World Report. Visit us online for more information on pediatric heart care.
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