Levi Olson, 4, of Marengo, fishing with his family on July 2, 2022. The left side of Levi's heart did not develop and he is now awaiting a transplant. (Provided by Lindsey Olson)

The only time anyone can tell 4-year-old Levi Olson of Marengo was born with a congenital heart defect is when he takes his shirt off, showing his surgery scars, said his mother, Lindsey Olson.

“You would never know anything different other than his size. He has no learning delays, no physical ailments. He played T-ball this summer and is an ATV junkie. He loves fishing,” she said.

Levi was born with hypoplastic left heart syndrome. The left half of his heart did not develop.

According to Children’s Hospital, where Levi was treated shortly after birth, in many cases the condition can be treated with three different surgeries.

But for Levi, the third surgery to help his heart pump blood and oxygen to his body won’t help, Lindsey said. A leaky valve doctors cannot fix surgically means Levi needs a heart transplant.

It was late in Lindsey’s pregnancy when an ultrasound discovered Levi’s condition. The news came on Sept. 29, which happened to be World Heart Day.

Both Lindsey, 32, and her husband, Zach, 34, went through “a mourning period” following the in-utero diagnosis, Lindsey said.

“What will our life look like? What does our future look like? What does his future look like if he survives three surgeries?” she said.

Doctors encouraged her to consider all possibilities, including terminating the pregnancy. “That is not in our beliefs. We know everything happens for a reason. … We were meant to do this,” Lindsey said.

She gave birth at Prentice Women’s Hospital in Chicago. Levi was immediately transported to Lurie. At six days old, he had his first open-heart surgery. It went well, she said, but 12 hours later, Levi went into cardiac arrest. After 36 minutes of CPR, then hooked to a heart and lung bypass machine, Levi survived the night.

After six weeks in the hospital, they were able to take Levi home and to his older brother, Noah, now age 6.

Noah, left, and Levi Olson of Marengo on the first day of school for Noah, Aug. 17, 2022. Levi is awaiting a heart transplant. (Provided by Lindsey Olson)

Levi’s second surgery came at four months. Doctors hoped to perform the third surgery a few years later, but the leaky valve ruled that out, Lindsey said.

For now, Levi is a happy and normal kid, if undersized for his age at just 28 pounds, she said.

Levi’s growth, development and the leaky heart valve are closely monitored. If that gets more serious, he will need to be admitted to Lurie as an in-patient until a heart becomes available, Lindsey said.

That wait could be up to nine months. Lindsey would most likely be at the Chicago hospital every day as her husband works, Lindsey said. And while the family has health insurance through his job, they know bills not covered by insurance “will be astronomical,” she said.

The Marengo community has stepped up to help, Rhonda Gieseke said. A close friend of Lindsey’s, Gieseke is helping to coordinate fundraising events.

“It is overwhelming for myself and the team members” who are helping, Gieseke said. “I don’t know how she gets though sometimes.”

Two fundraisers are planned in September to help with transplant and treatment costs.

A 5K Color Fun Run/Walk/Kids Dash is set for Sept. 18 at Indian Oaks Park, 825 Indian Oaks Trail, Marengo. Registration begins at 1:30 p.m. with the event starting at 1 p.m.

From 11 a.m. to 11 p.m. Sept. 26 at Fire Bar & Grill in Crystal Lake, a portion of the total food bill will be donated to the family.

Information on fundraising for Levi and the Olson family can be found at cota.org/campaigns/COTAforLovinLevi.

Copyright © 2022 Shaw Local News Network

Copyright © 2022 Shaw Local News Network