By AMERICAN HEART ASSOCIATION NEWS

Jacob Wells, Julianna Well, Nicole Snyder and the Jacob's Heart team at the 2012 Heart Walk

Twins Jacob and Julianna Wells were born five weeks early on June 3, 2004. Jacob weighed just under 6 pounds and Julianna weighed only 4 pounds, 8 ounces.

Doctors whisked both newborns off to the neonatal intensive care unit. Julianna needed help maintaining her body temperature, and Jacob needed to be readied for surgery. It would be the first of three he’d need to treat hypoplastic left heart syndrome.

Nicole and Bryan Wells found out their son had a heart defect before he was born. A routine ultrasound had revealed that the left side of his heart, including the aorta, aortic valve, left ventricle and mitral valve, was underdeveloped.

The diagnosis devastated the Stockton, California, couple.

They met with cardiologists in Sacramento and then Stanford Hospital, where the births would take place, to determine the best course of action. Doctors kept a close eye on the twins, performing roughly 20 sonograms.

A few days after birth, Jacob had his first surgery. It was a success, but one of Jacob’s vocal chords was damaged in the process.

He’d have a quiet, raspy voice and would be fed through a tube to avoid aspirating his food. Around age 4, Jacob was able to start eating pureed food. His favorites were pizza and refried beans.

Jacob didn’t let the obstacles of his heart condition get in the way of being a little boy. He liked playing video games and watching bowling. He took preschool gymnastics classes with Julianna, and would go on movie dates with his grandma. Even though Jacob couldn’t eat it, he’d suck on the buttery popcorn.

Jacob would eventually endure six open-heart surgeries. Every step of the way his resilience and spirit shined through.

“He was just the happiest kid. He always had a smile on his face, despite everything that he was going through,” said Nicole Snyder, who recently remarried.

Jacob was in first grade when doctors said he seemed ready to have his tricuspid valve replaced. The valve serves as a door for blood to eventually make its way to the lungs to pick up oxygen.

Nicole and Jacob Wells

Nicole with her son Jacob.

The couple knew that if their son didn’t get surgery, his heart would continue to fail. So they agreed to the surgery, which was performed in January 2011.

The procedure didn’t go as hoped and Jacob soon required a pacemaker. He wasn’t a candidate for a heart transplant because he was too weak to endure the surgery. In a final effort to prevent heart failure, Jacob was outfitted with an external device to help his heart pump oxygenated blood to his body.

Jacob Ryan Wells died on April 26, 2011.

“Even before he was born, I knew that we might not have that much time with Jacob,” Snyder said. “But as he grew and changed, life without him became less and less imaginable.”

She channeled her anguish into motivation to make a difference in the lives of other families affected by heart disease, the nation’s No. 1 cause of death.

As a You’re the Cure advocate, Snyder helped get a law passed in California in 2012 that requires a simple test to screen all newborns for congenital heart defects.

That same year, she formed the team “Jacob’s Heart” to raise money for the annual American Heart Association’s San Joaquin County Heart Walk. The 2015 San Joaquin County Heart Walk took place Sept. 12.

The team’s logo, created by Snyder’s co-worker, is a Superman shield with a “J.” Snyder said it is a tribute to her son’s love of superheroes and his own strength and bravery through adversity. “He was my Superman, my hero,” she said.

The "Jacob's Heart" team at the 2012 San Joaquin County Heart Walk.

The “Jacob’s Heart” team at the 2012 San Joaquin County Heart Walk.

Snyder and her family host an annual shrimp and pasta feed and the Jacob’s Heart Memorial Golf Tournament to raise money for the Heart Walk. In total, the team has raised more than $52,000 since its inception.

Julianna, now 11, helps with the fundraising. She got her elementary school to take part in Jump Rope For Heart using the slogan “Jump For Jacob.”

“She had shirts made for all the kids. It was really heartwarming” Snyder said. “Jacob was our hero on earth, and he is now our angel in heaven.”

Do you know a “Stories From the Heart” we should tell? Send an email to stories@heart.org.

Photos courtesy of Nicole Snyder