Boy With Heart Condition Gets Good Prognosis

March 31, 2008 — -- Doctors have given a 4-year-old boy with a life-threatening heart condition good news after he finally was able to get a genetic test he needed in order to manage his disease.

C.J. and his parents, whose story was featured on "Good Morning America" in February, learned that his kind of Long QT syndrome — a heart rhythm disorder — will not require a defibrillator implant.

"He's on the right meds, and we're avoiding triggers," said Dr. Wendy Chung, director of clinical genetics at Morgan Stanley Children's Hospital of New York Presbyterian. "He should do well."

Initially, C.J. couldn't get the test he needed to diagnose his Long QT, which can can cause rapid, chaotic heartbeats in mostly children and young adults. The condition kills 1,000 children and young adults each year and can lead to fainting or sudden death, according to the Cardiac Arrhythmias Research and Education Foundation.

There are several varieties of the disease, which are treated differently. So in order to determine the best course of treatment for C.J., doctors needed to know which kind he has.

Though the health-care community widely recognizes the need for the expensive test to better diagnosis Long QT, C.J.'s parents used Medicaid to try and attain it, but ran up against a wall of paperwork trying to get the cost covered. The test costs $5,400 and C.J.'s Brooklyn, N.Y., family was unable to afford it.

In February, GMA supplied the relevant paperwork to Medicaid, which then allowed the test. "It was as a result of GMA faxing information to the N.Y.S. Department of Health on Friday that provided information about the patient and his medical need for a Long QT genetic test," the Health Department said at the time.

The information ended C.J.'s parent's lengthy attempt to get the genetic test while trying to work their way through a Medicaid maze.

One of the problems C.J.'s parents had faced in getting their son the test was that only one lab in the country offered it. C.J. tried to get the test from Clinical Data, which is based in Connecticut. But the organization was not New York state certified and every procedure for Medicaid in the Empire State needs a permit.