Lifesaving Test Held Up by Paperwork

Feb. 28, 2008 — -- When "Good Morning America" found out that a sick 4-year-old boy couldn't get the genetic test he needed for his life-threatening heart condition, we got answers.

C.J. Lafortune suffers from a rare heart condition known as long QT, which affects approximately one in 3,000 people.

Though the health-care community widely recognizes the need for an expensive test to better diagnosis long QT, C.J.'s parents use Medicaid and ran up against a wall of paperwork trying to get the cost covered.

The one lab in the country that offers the test is in Connecticut, and was not certified with New York state. Since every procedure for Medicaid in New York needs a permit, C.J.'s test was being dangerously held up, until "GMA" stepped in.

In August Marie and Claudy Lafortune thought they had lost their little boy C.J. forever.

Marie heard a noise and went to check on C.J. At first she thought she was having a nightmare.

"He started shaking, moving his head in a strange way. … After a short while less than two minutes, he just stopped breathing. That's when everything went crazy. We called 911," said Marie.

Luckily C.J. began breathing again soon, but at the hospital Marie and Claudy got some bad news. He had suffered cardiac arrest, caused by a heart disorder called long QT.

"Since then, basically, my son, I have to keep him really close to me. I'm afraid when he goes to sleep, I'm afraid to leave him. So it's tough dealing with what's going on, its really tough," said Marie.

There are three main types of the syndrome, and if not treated specifically, the consequences can be deadly.

Dr. Wendy Chung explained that C.J. needed a special genetic test to determine which variety of long QT he had.

"Individuals that have this can actually lead completely healthy normal lives, but just suddenly boom one day drop dead out of the blue without any warning," said Chung.

"The risk of not having the genetic test is that C.J. could be overtreated, he could be more aggressively treated or he could be treated with the wrong medication and he could still be vulnerable at risk to suddenly die," she said.

"It was as a result of GMA faxing information to the NYS Department of Health on Friday that provided information about the patient and his medical need for a Long QT genetic test, that the department was able to quickly approve the use of this laboratory to perform the child's test. The only other thing we needed was a prescription for the test from the treating physician, who sent the department the prescription on Monday and Medicaid coverage was approved."

Find out more about long QT at www.careforhearts.org or www.mayoclinic.com.

Click here to send Cuomo your case.