Scaring up Support | Jeffrey, Woodside
By Mark Shwartz
When Jeffrey Kockos of Woodside was born with severe heart defects 23 years ago, doctors gave him little chance of survival.
“We were told that he wouldn’t make it to his first birthday,” recalls his mother, Susan. “But we were determined that our son would live a strong, healthy life, so we took him to Stanford. They gave us hope.”
Pediatric cardiologists at Stanford confirmed that Jeffrey had two congenital heart conditions—subaortic stenosis, or narrowing of the left ventricle, and hypertrophic cardiomyopathy, a thickening of the heart muscle.
When Jeffrey was 18 months old, he underwent heart surgery to widen his ventricle. He seemed fine until age 3, when he caught the flu and became violently ill.
We didn’t know what was wrong,” Susan says. “He kept throwing up and was in a state of total confusion.” Jeffrey was hospitalized and placed on intravenous fluids for a week. Doctors diagnosed him with acidosis—a condition in which high concentrations of lactic acid can overwhelm a child’s small body—but they were unable to determine why.
For the next nine years, virtually every time Jeffrey got the flu, lactic acid would fill his system, and he would be admitted to the Hospital until the virus passed. Each time, he was placed on IV fluids for several days until he was well enough to return home. But not all patients were as fortunate.
“I had roommates who had been there for weeks at a time,” he says. “When you know there are kids still struggling while you’re getting better, it makes you want to do something for them and give back to the Hospital and the staff for helping you.”
Jeffrey’s philanthropic spirit continued to grow, and at age 11 he came up with an inspired fundraising plan—he would build a haunted house for Halloween. Admission would be free, but visitors would be encouraged to leave donations for the Hospital. At age 13, with the help of family and friends, Jeffrey opened his first haunted house to the public and raised $604 for Packard Children’s.
Each year, the haunted house became bigger and more elaborate, with props, lights, moving parts, and tiny valves that shoot air at startled trick-or-treaters. His lactic acid condition also improved, and he no longer needed to be hospitalized when flu season arrived.
But at age 16, Jeffrey suddenly experienced severe chest pains. By then, he was under the care of Daniel Bernstein, MD, Packard’s chief of pediatric cardiology.
Bernstein traced the chest pains to Jeffrey’s heart surgery as an infant. It turned out that a surgical wire fastened to his breastbone had fractured and was irritating a nerve ending under his skin. When Packard surgeons removed the wire, the chest pains went away.
The surgical team also gave a sample of Jeffrey’s muscle tissue to Gregory Enns, MD, director of biochemical genetics, for closer analysis. Using technology unavailable 20 years ago, Enns was able to diagnose Jeffrey with complex IV deficiency, a rare metabolic disorder that caused his bouts with acidosis when he was younger, and may have contributed to his congenital heart problems.
Today, Jeffrey is a successful real estate agent. His health is good, and his long-term prognosis is excellent.
“The nurses, doctors, and volunteers at Packard have been amazing to Jeffrey and to our family,” Susan says. “The care was brilliant. It saved all of our lives.”
And over the last decade, thousands of people have gone through Jeffrey’s Haunted House, raising more than $20,000 for Packard Children’s Hospital. For Jeffrey, the secret to giving is to have fun while you’re doing it.
“I love it so much,” he says. “It’s like a double-end gift: I get to do what I enjoy, which is to build a haunted house, and I also give back to the Hospital that did so much for me.”