Ten-year-old Cole Klein of Papillion loves the usual boy stuff — reptiles, golf, flag football and P.E. class.
Unless he takes off his shirt, most people would never guess that Cole was born with a serious congenital heart defect, said his mother, Tiffany Mytty-Klein.
Cole's condition wasn't diagnosed until, at 53 days old, he suffered congestive heart failure. He has since undergone several operations to correct the problem. Even if he requires additional surgeries, his family has every reason to believe that he will enjoy a normal lifespan, she said.
Mytty-Klein wanted to make sure that kids like Cole get diagnosed earlier, before they are at risk of serious complications or death. She took her concerns to her state legislator in the fall of 2011, and this week Sen. Jim Smith of Papillion plans to introduce a legislative bill requiring screening of newborns for such defects.
“My gratitude to him is beyond huge for taking this on and seeing the importance of this,” said Mytty-Klein, one of a number of moms nationwide who advocate screening.
The screening is rapidly becoming more common across the country.
At least a half-dozen states have already mandated it, and several more have adopted legislation and are in the process of implementing it, according to the American Heart Association. More states, including Iowa, are expected to introduce legislation soon.
The association applauded the Nebraska proposal.
Smith said he sees no downside in requiring the screening.
“In the long term, it will save money for the state and for parents,” he said. “And more importantly, it will save lives.”
The quick, painless and inexpensive test involves wrapping a probe around a baby's hand or foot. About 4,800 babies a year born in the U.S. — 11.6per 10,000 — have one of seven critical defects that the testing is mainly intended to target, according to the federal Centers for Disease Control and Prevention.
In September 2011, U.S. Health and Human Services Secretary Kathleen Sebelius recommended adding screening for critical congenital heart defects to the tests routinely given to newborns.
A federal committee recommended pulse oximetry, a test that measures the amount of oxygen in the blood. Low levels can signal a defect that might not be detected by prenatal ultrasounds or physical exams after birth. Hospitals could release otherwise healthy-appearing babies with the defect.
The Nebraska Legislature conducted an interim hearing on the issue last summer. A number of hospitals in Nebraska and Iowa have already begun screening. A recent survey of Nebraska hospitals indicated that about 72 percent of births in 2011 occurred in hospitals that now screen.
As of June, nine Nebraska hospitals that deliver more than 500 babies a year were screening, according to the Nebraska Health and Human Services System. Six more hospitals with more than 500 births were planning to screen.
In Iowa, all larger hospitals perform the screening, according to the Iowa Department of Public Health.
Cole was born in Kansas in August 2002. Neither prenatal ultrasounds nor physical exams after his birth indicated any problems.
But Mytty-Klein said she and her husband, Shawn Klein, kept asking why their son seemed to be breathing fast and why his hands were cold.
A couple of days before they went to a second doctor, they took him to an urgent care center because he appeared to be gagging as he exhaled in his sleep. An X-ray was normal. They were told it was a virus.
The new doctor sent them to the hospital. They thought she suspected a respiratory illness. But after an echocardiogram, which produces a more detailed image than an X-ray, they were on a plane to Omaha. Several years later, they moved to the Omaha metro area.
Mytty-Klein, a native Nebraskan, said she believes that the screening could have diagnosed Cole's condition earlier. Members of the family, which now includes Mason, 5, don't look back, she said. But they want to make sure others find out sooner.
“Heart defects can still take children's lives before their first birthday,” she said. “But it shouldn't be because they never had the chance.”
Cole said his mom is making a big effort. He knows other children who have died from heart disease.
“I was lucky,” he said. “I got saved from it.”
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