Newborns at Risk From Lack of Screening

June 30, 2004 -- Doctors call it the tale of two Zacharys.

Zachary Black was born last year with a rare genetic disorder that causes brain damage in infants, but it was detected during a newborn screening program. He's been given a special diet and vitamins, and today he's an active 1-year-old, leading a normal life.

Zachary Wyvill was born at about the same time, with the same rare disease. But he did not get the same screening at birth. By the time he was diagnosed, the disease had left him severely disabled, unable to eat or even sit up on his own.

"It was devastating to learn that something that is such a tragedy for our family and for Zach's future was so easily preventable," said his mother, Cindy Wyvill.

Testing Requirements Vary

All states require some testing of newborns. New technology can now identify dozens of genetic disorders from a drop of blood. But no two states follow the same approach.

To find out which tests are done on newborns in your state, click here.

California requires that newborns be screened for only four diseases. Other states, such as Mississippi and North Dakota, insist babies be checked for at least 40 disorders.

"It's obviously not fair if you believe that every child should have the right to the same type of test, regardless of where they are born," said Dr. Paul Fernhoff of Emory University in Atlanta.

Many states facing huge budget deficits argue they cannot afford the expanded testing, which, Fernhoff said, doesn't make sense.

"If you don't pay the money now," he said, "you will wind up paying a lot more later on for the educational and medical care of these children."

But most parents have no idea what tests are being done on their children. And some of the diseases are so rare, most doctors have never heard of them.