He didn't know his aorta was about to burst. His son's rare diagnosis saved his life

Meghan Holohan
·4 min read

When Parker Anderson was 6 months old, he woke gasping for breath in the middle of the night. Mom Karlie Anderson noticed his chest was "caved in," so she and her husband rushed Parker to the hospital, she recalled in a segment on TODAY aired Aug. 21.

The incident led Parker to be airlifted from their rural Wisconsin community to the Mayo Clinic in Rochester, Minnesota — the first of many hospitalizations, Karlie Anderson said.

His whole life, Parker has had health problems, including asthma, severe allergies, scoliosis and pectus excavatum — a congenital condition where the cartilage of the breastbone and ribs grows incorrectly and the sternum sinks down, according to Children’s Hospital of Philadelphia.

The Andersons visited numerous doctors in an effort to understand what was causing Parker’s health challenges. Eventually, they got an answer: a genetic disorder called Marfan syndrome. One in 5,000 people have the gene for it, which they can pass down to their children, often unknowingly. This was the case for Parker's dad, Evan Anderson, who also tested positive for Marfan syndrome.

“It’s kind of surreal,” Evan Anderson said on TODAY. “Growing up, I was so healthy, and then all of a sudden, (I) realized that, oh, I have major issues.”

What is Marfan syndrome?

Marfan syndrome is a genetic disorder that impacts the body’s ability to make connective tissue, which bolsters the bones, muscles and organs, according to the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS). Tissue throughout the body, including in the blood vessels, heart, cartilage, ligaments and tendons, can become too elastic, and stretch and weaken. The condition also causes bone to grow to longer than average.

Symptoms can be wide-ranging, and not everyone experiences the same signs. People with the condition tend to be tall and thin with long arms and legs, like Evan Anderson, who played Division I basketball at University of Wisconsin.

According to NIAMS, symptoms can include:

  • Curved spine

  • Flat feet

  • Headache

  • A concave chest or one that protrudes out

  • Fluttering or rapid heartbeat

  • Loose joints

  • Narrow, long face

  • Lower back pain and leg numbness

  • Short of breath

  • Blurry vision or extreme nearsightedness

  • Stretch marks

Most people inherit the gene that causes Marfan syndrome.

Marfan syndrome leads to heart problems

Evan Anderson had faced few health problems in his life, but after his diagnosis of Marfan syndrome, doctors discovered something worrisome. His aorta had become weakened due to the condition, and it had swelled up dangerously. He needed surgery immediately.

“(The doctor) told us I probably had around two months left before it would burst,” Evan Anderson said. A burst aorta is often fatal.

Evan Anderson's doctor, Dr. Malakh Shreshta, said the timing of his diagnosis was "very lucky."

“A lot of patients don’t have symptoms. The aorta starts getting bigger, but that doesn’t cause any symptoms until it bursts," the cardiovascular surgeon at Mayo Clinic told TODAY. "Then it’s too late.”

Finding out her husband had come that close to death was difficult for Karlie Anderson. “To be two months away from losing my best friend, it’s crazy,” she said, tearing up.

Evan Anderson feels confident that his son "definitely" saved his life. "If it weren’t for him being here, and going through all the struggles he’s gone through," his potentially fatal swollen aorta never would've been discovered, he said.

Parker's heart, on the other hand, looks healthy so far. Still, his Marfan syndrome diagnosis means he has to stop playing sports and will need to learn to enjoy some slower-paced activities.

“He did a basketball camp. He loved it,” Karlie Anderson said. But Parkers parents had to tell him: "'I’m sorry, buddy. You can’t do that anymore.'"

Sports had been a way to bond with his son, so Evan Anderson is struggling with the news.

“One of the biggest things that hit me hard was the fact that I won’t be able to teach (Parker), coach him in certain things through sports,” he said. “I’ll want to try to teach him through a different route.”

Now the duo spends time fishing together.

“Seeing him smile and enjoy life … it definitely touches my heart,” Evan Anderson said.

This article was originally published on TODAY.com