Owasso boy has rare artery condition

BY SHANNON MUCHMORE World Staff Writer
Monday, February 11, 2013
2/11/13 at 8:09 AM

When doctors at Arkansas Children's Hospital diagnosed Aiden Curtis, they told his mother they had never seen anything like his condition before.

Aiden, now 4 and living in Owasso, has a congenital condition called Arterial Tortuosity Syndrome, meaning his arteries are elongated and twisty.

After being hospitalized for a pneumonia-type illness when he was 2, doctors detected a heart murmur and ran several tests. They revealed the tortuous arteries in his chest, head and neck, said his mother, Andrea Taylor.

Aiden is one of few people in the United States known to have ATS. About 100 people in the world are now recognized as having the condition, she said.

Some with ATS don't live past age 5, but two people older than 50 have been found, she said.

"We honestly have a pretty normal life with him, and we're completely blessed," she said. "We know that each day is a blessing, and we're not guaranteed tomorrow."

Aiden's older brother does not show any signs of the condition.

In July 2010, Aiden had a heart catheterization. It took two hours for doctors to access the femoral arteries.

"I recognized then that this was something I hadn't seen before," said Dr. Eudice Fontenot, a pediatric cardiologist with Arkansas Children's Hospital.

After his diagnosis, Aiden had a procedure known as a patch plasty and a few months later doctors performed a balloon angioplasty. Aiden is one of the first patients with the condition to be treated with these procedures, Fontenot said.

"We're still sort of defining the natural history of this disease," he said.

Aiden has done well with the treatments and should be OK as long as blood is getting to his vital organs. He will likely eventually have more angioplasty, Fontenot said.

Taylor said she prays a lot and cherishes every day with Aiden. She tries to make birthdays and holidays particularly special and sometimes she will give him an extra kiss before she leaves for work.

You wouldn't know about Aiden's condition from looking at him. He is limited in his physical activity, but he's inquisitive and imaginative. He likes Batman and can sometimes be shy.

A prekindergartener, he receives physical and occupational therapy both at school and privately.

He can be susceptible to illness and has had pneumonia several times. Because of his condition, he wouldn't qualify for a transplant if his heart failed.

"ATS is kind of a time bomb waiting to happen," Taylor said.

Taylor carries around a big binder with Aiden's medical records. She's done as much research as she can on ATS and is always trying to learn more.

"It's the most life-changing experience that anyone can ever experience," she said.

Original Print Headline: Cherish every day

Shannon Muchmore 918-581-8378
shannon.muchmore@tulsaworld.com

Associated Images:

Aiden Curtis, 4, plays recently at an Owasso park. Aiden has a rare congenital condition called Arterial Tortuosity Syndrome, meaning his arteries are elongated and twisty. MIKE SIMONS / Tulsa World

Four-year-old Aiden Curtis (left) pauses at an Owasso park for a photo with his mom, Andrea Taylor, his stepdad, Niki Taylor, and his brother, Aaron Curtis, 6. MIKE SIMONS / Tulsa World

Aiden Curtis, 4, takes a break while playing recently at an Owasso park. He has a congenital condition called Arterial Tortuosity Syndrome that limits his physical activity. MIKE SIMONS / Tulsa World

Aaron Curtis (left), 6, plays with his brother Aiden, 4, at an Owasso park. MIKE SIMONS / Tulsa World