Alexavier Zipp walked across the stage at the West Creek High School graduation in Tennessee, United States, on May 28, 2022, to celebrate the culmination of numerous milestones, proving that no hurdle, mental or physical, could stand in his way.
Twenty-one-year-old Alexavier was born prematurely at approximately 35 weeks in Fort Irwin, California. His mom, Luann Zipp, says when she first saw him, she told the doctors she suspected he had Down Syndrome. This condition impacts chromosomes and can ultimately cause mental and physical challenges and delays in development. But the doctors at Fort Irwin disagreed with her assessment.
A Difficult Diagnosis
Alexavier only stayed at Fort Irwin four days before needing to be airlifted to Loma Linda University Children’s Hospital’s Neonatal Intensive Care Unit (NICU) for more intensive treatment after showing signs of circulation issues, where he would spend nearly two months.
“His little hands and feet were turning purple, so we knew something was wrong,” Luann says. “Sure enough, we got to Loma Linda, and genetic testing proved that Alex had Down Syndrome.”
The testing also showed a serious heart condition in the infant. Alexavier was born with an atrioventricular canal defect — a hole in the wall between his heart’s chambers and faulty heart valves.
The World’s Smallest Pacemaker
At the end of April 2001, the Zipp family returned to Children’s Hospital for Alex’s heart surgeries. The late Leonard Bailey, a world-renowned heart surgeon, performed Alexavier’s multiple surgeries. Upon completing the first surgery, Bailey told Luann that her son would be 100 percent pacemaker-dependent for the rest of his life.
What she didn’t realize until after the second surgery was that this was no ordinary procedure; her son was receiving what was then the world’s smallest pacemaker. Alexavier underwent the operation on May 3, 2001. He was the first patient in the United States to receive the pacemaker after its approval by the U.S. Food and Drug Administration. The device was approximately 40 percent smaller than the standard pacemaker and roughly the size of two quarters (25-cent coins) stacked together, weighing 12.8 grams.
Luann went through many emotions very quickly, with a mountain of information for her and her family to process. “I thought, ‘Oh my Lord, what are you getting me into?’ ” she says. “But at the same time, I thought, ‘Lord, others have gone through it before me — I’m not walking into the unknown.’”
Since receiving his first pacemaker, Alexavier has moved across the country with his family, going to multiple hospitals and receiving multiple replacement pacemakers. Luann says her son is now a professional at having the procedure performed on him. She explains that his own heart has approximately four natural beats per minute, and he will continue needing replacements throughout his life as each device wears out.
Overcoming Continued Challenges
Apart from the medical challenges of his heart condition, Alexavier has long faced censure based on having what she says is low-functioning Down Syndrome. At one point, Luann was even told she should be buying a cemetery plot for her son instead of life insurance, since “he wouldn’t live long.”
Alexavier continually proves the naysayers wrong. While he has a limited vocabulary, his communication skills improved during his time in high school, Luann says. She encourages others never to underestimate or limit a child with special needs but rather “to let them do their own thing.” Alexavier has no problems expressing his emotions when he’s at home. Luann describes him as silly and flirtatious. Before the pandemic, he ranked in the state with the Special Olympics for bowling.
Although Alexavier’s immediate next steps are still somewhat unknown, Luann hopes to find an adult education program for him to continue his learning journey.
She says it was incredible watching Alexavier and her daughter Diviana graduate together, cheered on by their classmates and surrounded by their friends. But she wishes Dr. Bailey — who died in 2019 — could have seen Alexavier graduate too. “I would thank him for his time and for the care my son received,” she says. “Without it, this milestone would not have been reached.”
Excellence in Pediatric Heart Care
For two years in a row, Loma Linda University Children’s Hospital has been recognized as a Best Children’s Hospital in cardiology and heart surgery by U.S. News & World Report.
Anees Razzouk, chair of the Department of Cardiothoracic Surgery and a colleague of Bailey for many years, says the Children’s Hospital continues the legacy of Bailey to provide state-of-the-art cardiac care to hundreds of children like Alexavier.
“Alexavier started life with complex congenital heart disease that was complicated early on by respiratory failure and kidney dysfunction,” Razzouk says. “His survival for 21 years and good quality of life now are a tribute to the love and grit of his family and to the healing power of the Almighty. The surgical intervention by Dr. Bailey and the advances of technology gave him a chance for a better life.”
The original version of this story was posted on the Loma Linda University Health news site.
