First Lady and State Officials Urge Texans to "PREVENT A TRAGEDY – TEST YOUR BABY"
April 14, 2005
AUSTIN — Texas First Lady Anita Perry, State Representative Myra Crownover, Denton, State Representative Vilma Luna, Corpus Christi, and the March of Dimes are informing parents of newborns about how they can prevent tragic consequences by getting their babies tested for 29 disorders. All 29 disorders, when detected, have effective treatment options (sometimes as simple as a change in diet), which can prevent brain damage, physical disabilities and death.
Texas currently screens newborns for eight of the 29 disorders recommended by the American College of Medical Genetics (ACMG) and the March of Dimes. A majority of states are already screening newborns for 25 or more disorders. Texas is only one of nine states that screens for eight or less disorders, ranking Texas in the bottom 20 percent of states in the number of disorders for which it screens.
"We want babies born in Texas to have every opportunity to live a healthy, long life," Perry said. "Until state testing increases from the current level, we urge every parent to obtain supplemental testing for their children."
Texans can learn how to obtain supplemental newborn screening by visiting the National Newborn Screening and Genetics Resource Center Web site at http://genes-r-us.uthscsa.edu, the March of Dimes Web site http://www.marchofdimes.com/texas or by calling Save Babies Through Screening Foundation at 888-454-3383. These sites/number will direct parents to labs that can provide the extra tests for approximately $25.
Melissa and Joe Skidmore of Austin and their doctors were unaware of the supplemental screening options when they had their son, Peter. Melissa read many books about pregnancy and was diligent in getting the best prenatal care. In May 2001, she gave birth to a healthy, active baby. At 7 months old, Peter became critically ill.
His illness went misdiagnosed for several weeks until doctors gave him a full range of tests, which identified Glutaric Acidemia Type I (GA I), one of the disorders for which the State of Texas does not currently screen. By then, it was too late for Peter and, as a result, he has no motor skills and will be confined to a wheelchair for his entire life.
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