Justin Blevins

Justin Blevins, left, stands with his younger -- but taller -- brother, Austin, outside their Lincoln County home. (Sarah Hogue / sarah@theinteriorjournal.com / August 8, 2013)

When Lincoln county native Pam Stephens was 20 weeks pregnant, she went in for an ultrasound to find out what sex her baby would be. Medical staff let Stephens know she would be having a boy.

Unfortunately, that was not the only news they had for her. Stephens also learned that her baby would be born with a congenital heart defect called hypoplastic left heart syndrome.

Stephens’ son would have an underdeveloped left side of his heart, causing it not to function properly.

Once Stephens had given birth to her son, Justin, he went in for open-heart surgery, the first of three he would need over the next 4 years. Now, 13 years later, Justin is living almost like a normal kid.

Stephens said because of his condition, Justin cannot do any activities that increase his heart rate such as athletic sprinting exercises. He also cannot go to any loud concerts because the bass beat pounds in his heart and makes his chest feel uncomfortable.

Stephens said there is no cure for Justin’s condition. During the open-heart surgeries Justin has needed to survive, doctors moved blood vessels from the left side of his heart to the right. This way, the right side of the heart does all of the work since the left side did not function properly. Stephens said Justin will eventually have to have a pacemaker put in. A heart transplant might also be a possibility.

As a result of his underdeveloped heart, Stephens said he has also developed a condition where his body does not produce enough protein, so he has to try to take more protein in. This means Stephens has to adjust everything she cooks to make sure there is extra protein in it. The protein condition also means when he gets hurt, he bleeds a lot more than other kids and takes longer to heal.

As a result of the protein condition, Justin is also much smaller than most kids his age. Although Justin is 13, he is smaller than his 11-year-old brother Austin.

Stephens admits she has had several low moments in dealing with Justin’s condition. She said the worst was the waiting she had to do during his first open-heart surgery and wondering if he would survive it. Stephens believes prayer and the support of family and friends has helped her get through the hard times.

Despite his medical conditions, Justin is allowed to play sports as long as he gets regular breaks. Justin said he used to play basketball, but doesn’t any more. Justin wishes he could play every sport like other kids.

Justin said some people with his condition do not have it as severely as he does and are able to do major athletic events such as run a marathon without it affecting them.

Stephens said, “While Justin’s older siblings baby him and try to protect him, his younger brother Austin picks on him just like any other kid.”

To combat his heart condition, Justin has to take blood pressure medicine and two diuretics daily. The diuretics keep him from swelling up due to the lack of protein and the blood pressure medicine keeps his blood pressure in check.

Justin’s heart condition is not something he will be able to pass on to his future children.

“Justin’s condition is a rare, random occurrence that just happens,” Stephens said.

When Justin was first born, his parents did not know of anyone else who had his condition. Now, they’re aware of support groups all over the country.

Stephens is a member of a group for people dealing with post-fontan protein-losing enteropathy — the protein condition Justin has — and the locally-based non-profit Kerrington’s Heart Inc. These support groups offer comfort to families who have children with the same medical conditions as Justin, and they use social media such as Facebook to stay in contact.

Another group called the Lil’ Heart Sluggers works with the Lexington Legends for the benefit of a group of children with heart conditions. Recently, Justin and his family attended a baseball game where Justin and other children got to go down and run on the baseball field with one of the players.

Stephens said she hopes her son’s story gives hope to other children with heart conditions and their families.

“Stay strong,” she said. “Justin has survived more than I ever felt possible.”