RALEIGH: Raleigh family pushes for reauthorization of newborn sc - WNCN: News, Weather

Raleigh family pushes for reauthorization of newborn screenings act

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At three days old, Ethan Mullis underwent his first open heart surgery. At three days old, Ethan Mullis underwent his first open heart surgery.
RALEIGH, N.C. - The newborn screening test looks for more than 30 disorders and conditions and every newborn in North Carolina has access to it. Now, families and politicians are working to expand the screenings to help save more lives.

In Raleigh, a nurse at Rex Hospital noticed the coloring of newborn Ethan Mullis was darker than normal. The nurse ran another test on top of the newborn screening test.

“She took it upon herself to take him back to the nursery, where she hooked him up to something called a pulse oximeter to check the oxygen in his blood,” said Ethan Mullis’ mother Joye.

The pulse oximeter revealed the oxygen in his blood was low. Doctors soon determined Ethan Mullis was born with a congenital heart defect.

“It was devastating,” said Ethan Mullis father Jeramie.

At 3 days old, Ethan Mullis underwent his first open heart surgery.

Ethan Mullis is more than 5 years old and the pulse oximeter is now part of the routine newborn screenings test.

“A baby’s life shouldn’t depend on a nurse’s intuition,” Joye Mullis said. “I’m so thankful that she acted upon that and she took the steps necessary but it’s been really important to our family that other children are afforded that same opportunity.”

The Mullis’ experience has Joye traveling to Washington D.C., to testify to Congress about passing the newborn Screening Saves Lives Reauthorization Act, H.R. 1281/S. 1417.

Sen. Kay Hagan is close to reauthorizing funding for the federal act passed in 2008 that sets guidelines for newborn screenings in every state.

The proposed act reauthorizes federal programs that provide assistance to states to improve and expand their newborn screening programs. The expansion includes parent and provider education and to ensure laboratory quality and surveillance for newborn screenings.

“When we look at North Carolina, over 120,000 babies are screened every year and about 400 of them test positive for some sort of hereditary condition,” Hagan said. “The key is the timely diagnosis treatment.”

The House could vote on the measure as early as this week. If it passes the House, it will go to President Barack Obama where he could sign it into law.

Dr. Stephen Parsons of Rex Neonatology said this test alone is the difference between life and death.

Parsons said changing a baby's diet can help some issues if they are caught early enough using the screenings. Some missed conditions can result in a baby suffering from seizures or retardation, Parsons said.

The test itself is $19 in North Carolina and it is free if a family can’t afford it.

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