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Prenatal surgery saves LI baby from rare syndrome

A screen grab from Medical team operates on

A screen grab from Medical team operates on LI baby with rare condition. (Jan. 14, 2010)

The syndrome is called CHAOS, but the scene in the operating room last September was anything but.

Infant Justin Olivares was diagnosed in utero with Congenital High Airway Obstruction Syndrome, or CHAOS - a rare condition that is nearly always deadly if not detected in the womb.

Doctors had to act before Justin was born. Because Justin's airway was blocked due to the syndrome, he would not be able to draw a single breath after birth - and would suffocate.

The condition is so rare that only 50 cases of it have been reported in medical journals in the past 20 years.

On Sept. 22, when Justin's mother, Derly Olivares, was 36 weeks pregnant, a team of 35 doctors and nurses crowded together in the operating room at Schneider Children's Hospital. They remained quiet so as not to stress her out, and then began to perform the risky fetal surgery to create an airway for Justin while he still received oxygen from the placenta attached to Olivaress body.

The surgery was a success. Now, nearly four months later, Justin is breathing regular air through a tube in his throat, and is ready to go to the family's Huntington Station home.

He still has an unrelated heart condition, but doctors say it should clear up on its own.

"He has an excellent prognosis for a normal life," said Dr. Dennis Davidson, director of neonatal services at North Shore-LIJ.

Justin's father, Julian Olivares, said he and his wife prayed throughout her pregnancy that Justin would make it.

"It was really, really scary," he said. "It was a very dangerous procedure for her, and the baby as well."

Now, the family is preparing for Justin's homecoming in the next few weeks. Olivares, who works as a dispatcher at an auto-parts store, said their other son, 8-year-old Jason, is looking forward to taking care of his little brother.

"When we drive in the car, he said, 'I want Justin to be sitting right next to me, right here,' " Olivares said. "He's very excited and happy."

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