Former U.S. Sen. Lugar’s great grandson brings awareness to rare heart disease, opens up about personal battle

This is an archived article and the information in the article may be outdated. Please look at the time stamp on the story to see when it was last updated.

(April 6, 2016) -- Congenital Heart Disease is a rare problem, but it has struck a prominent Indiana family.

Sen. Richard Lugar’s great grandson, Lukas Corwin, was born with CHD four years ago and nearly died. His diagnosis: Truncus Arteriosus. Of the 4,000,000 live births in the U.S. every year, 300 of them are patients with that condition.

Congenital Heart Disease is the lifelong consequence of a heart defect or structural abnormality of the heart, present at birth. Heart defects are the most common birth defects and the leading cause of birth defect related infant death.  There are 40,000 babies born with heart defects each year and more than 5 percent of them will not live to see their first birthday.  Lukas Corwin is lucky. He is 4 years old with a bright future.

An ultrasound showed Lukas’ problem before he was even born. Within days, he was on the operating room table at Riley Hospital for Children at IU Health.

“He went from appearing to be a normal healthy baby when he was born to very quickly being on a ventilator and being full sedated,” says his father, Jonathan Corwin. “And at various times alarms were sounding and personnel in the NICU were rushing to his side and urging him to take another breath. His color would drain and he would stop breathing.”

Today, with a surgically repaired heart, he’s doing well, but he faces a lifetime of monitoring and valve repairs, much like other Congenital Heart Disease patients.

“There is no cure, it is the number one birth defect in the U.S. and the number one birth defect leading to infant mortality,” says Corwin.

When Lukas underwent his first surgery, his great grandfather, former Indiana Senator Richard Lugar told his story as part of the congressional record.  Lugar chaired the Indianapolis Congenital Heart Walk at Butler last year and has been instrumental in getting congressional leaders to meet to discuss the money needed to support research for CHD.

Now, Lukas and his father are getting the word out about the 2016 Indianapolis Congenital Heart Walk, which takes place May 21 at Butler University.  If you would like to participate or want to learn more, click here.

4 Your Health is presented by American Senior Communities.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s