CENTER TWP — Cael Lewis has surpassed the doctors’ expectations by living for 17 months.

Tanya and Travis Lewis’ son, Cael, was born with heart defects. The Lewises now are raising awareness about the disease.

“We didn’t know about heart defects,” Travis said. “Our eyes have been opened.”

The family has been chosen as the spokespeople for the Butler Heart Walk on Oct. 12 at Butler County Community College. The couple has been sharing the story and what their family has been through for two years.

“Most people when they think of heart disease think of a man later in life, 60s or older. Unfortunately, way too many children are born with a heart defect too,” said Barbara Roth, a regional senior division director for the American Heart Association.

At 20 weeks of pregnancy, the Lewises went to the doctor’s office for a routine ultrasound.

“We just went in to find out the gender,” Travis said. What the couple found out was their son had congenital heart defects known as a broken heart.

Among problems with his heart, Cael has hypoplastic left heart syndrome, a rare defect that happens in one in every 10,000 births where the heart does not fully develop. The doctors also found hydrops fetalis or signs of heart failure in utero.

“In three hours our world was turned upside down,” Travis said.

According to the couple, they were given four option: “First, terminate the pregnancy, second, ‘let nature take its course,’ third, give birth to the baby and he will be required to undergo a series of three staged corrective surgeries and fourth, attempt an experimental intrauterine surgery performed by pediatric cardiologists in Boston,” the Lewises said.

Cael was not eligible for the fourth option because the pregnancy was too far along.

“Based on our faith and religion, termination was not an option,” Travis said.

Ultimately, the couple chose option three; they would do everything in their power to save their son.

“We wouldn’t go down without a fight,” Tanya said.

Cael was born March 31, 2012, in Pittsburgh, and the fight began. He was taken to Children’s Hospital of Pittsburgh to the cardiac catheterization lab.

“There they created a passage between the top two chambers of his heart to allow the limited blood flow to circulate,” according to the Lewises.

At 5 days old, Cael had his first open heart surgery, but his body was having trouble adapting to the new structure.

“Cael went into cardiac arrest and required life support to aid his troubled heart,” the Lewises said.

After a few shaky weeks, Cael was released from the hospital and finally was able to go home with his parents. However, Cael, who was fed through a feeding tube until this time, did not know how to eat.

“He didn’t know how to eat because he didn’t have to when he was born,” Tanya said.

This led to setbacks in his developmental and oral skills. At 5 months old, Cael had a feed tube surgically placed in his stomach.

The couple said they are working with an occupational therapist and doctors to help their son eat.

“His eating is getting better,” Tanya said.

At almost 4 months old, Cael had his second cardiac catheterization, followed by another open heart surgery just days later.

Cael’s next open heart surgery could happen in the next year, but it is not scheduled now.

They also said their son could eventually need a heart transplant.

“It could happen at anytime,” Tanya said. “We don’t know what the future holds for him.”

Today, Cael is doing better.

“He is progressing well,” Travis said. “He just started walking, and started talking three weeks ago.”

It is because of their will to fight and to spread awareness that the Lewis family was chosen as the spokespeople for the Butler Heart Walk.

Karen Colbert, director of communications at the American Heart Association, said “Volunteers have been our lifeblood since we were founded in 1924. They share talents, insights and energy, and give shape to our mission.

“They also share their personal stories to help us spread awareness and educate communities across the country.”

In preparing for the fundraising event this fall, Roth said, “It’s never too early to register for one of the fall heart walks.”

Registration is open for the Butler Heart Walk on Oct. 12 at BC3. Registration is available at www.heart.org/butlerpawalk. For information about the walk, contact Roth at 724-453-1004 or barbara.roth@heart.org.

“The money raised at the heart walk will continue to go toward heart research and education and help both young and old, men and women,” Roth said.

The Lewises said, “We encourage everyone to spread awareness about heart disease and to become active in the Butler County Heart Walk.”