C Closing the gaps *** Expanded newborn screening helps save lives J.D. VENTURA; LAURIE SMITH ANDERSON 1,002 words 1 May 2006 The Baton Rouge Advocate 1 English Copyright (c) 2006 Bell & Howell Information and Learning Company. All rights reserved. Closing the gaps *** Expanded newborn screening helps save lives Ashli Kennedy had been home from the hospital with her newborn daughter for a week when a doctor called her with an urgent message. A blood screening performed at Baton Rouge General Medical Center showed that little Alaysia Lands had tested positive for a potentially fatal genetic disease called galactosemia. The 23-year-old, firsttime mother panicked. The condition means babies cannot break down galactose, which is produced when dairy products are digested. The build-up of galactose, which starts to store in cells, becomes toxic, and causes the infant's body to produce harmful chemicals, which can lead to cataracts, liver disease, mental retardation and even death. Kennedy had to stop feeding the baby dairy-based formula immediately, and she was told to bring the child back in for further testing. Luckily for Kennedy and her baby, no damage was done. Alaysia was immediately put on a soy milk formula and all was well. But the experience rattled the new mother. "When I found out that regular milk can kill her, I was crying," said Kennedy. "I went and looked up (galactosemia) on the Internet, and it really panicked me." According to the Web site http://www.savebabies.org , an organization that advocates for expanded newborn screenings, one in 7,500 live births will have "some form of galactosemia." The Web site also reports that death can occur as early as the child's first two weeks of life, with many newborns dying from E. coli infections leading to sepsis. While Kennedy's baby had a condition covered by 10 screenings mandated by the state, babies with other genetic diseases can fall through the cracks when hospitals don't order the expanded screening regimen. When it came time to decide whether Baton Rouge General would run the required 10 genetic screens on newborns or run a more comprehensive test that checks for 29 additional disorders, Cheri Johnson, director of maternal child services, knew what she had to do. To Johnson, who has worked extensively with the March of Dimes and whose child has a vision impairment from a birth defect, testing the blood of newborn babies for additional, and often preventable or treatable illnesses, was something she felt the hospital should be doing ethically. After lobbying for the change for more than a year, the hospital began the expanded screening process after the hurricanes. The decision, however, had a price tag on it. Because the state gives health-care providers free newborn test kits, which check for 10 disorders, running the more complete battery of blood work would require the use of an outside lab, and the turning down of the free kits. After some number crunching, she determined her department would need $30,000 a year to administer the more complete testing. Budgets were tight, but she found the money. "We basically had to scrape, borrow and steal to pay for this," said Johnson. "... But these are our children." 2008 Factiva, Inc. All rights reserved. Woman's Hospital has also been screening newborns for 39 different illnesses since October, according to spokeswoman Jodi Conachen. Samples were being tested in New Orleans, but since the hurricane, are now sent out of state. Using a single drop of a newborn's blood, specialized laboratories can check for the 39 serious, sometimes life- threatening, inherited diseases. Experts estimate that, if the tests were performed on every baby at birth, hundreds of deaths and life- threatening bouts of illness could be prevented. Today, every baby born in the United States is tested for two rare diseases that can cause retardation if untreated: congenital hypothyroidism and the metabolic disease phenylketonuria, or PKU. Most are also tested for sickle cell anemia, according to the U.S. National Newborn Screening and Genetics Resource Center. Additional tests, not required by all states, can screen for other rare diseases, many of which are treatable if discovered early. Another benefit is that parents will have crucial information to make informed decisions about having additional children. Louisiana law requires that newborns be screened for galactosmia and the three diseases listed above, as well as arginiosuccinic aciduria, biotinidase deficiency, citrillunemia, homocystinuria, maple syrup urine disease and medium chain Acyl-CoA dehydrogenase deficiency, according to Charles Myers, administrator of the Louisiana Office of Public Health's genetics program. There is a bill before the Legislature this session to expand screening. House Bill 293 is in line with the recommendations of the American College of Medical Genetics, which are supported by groups such as the March of Dimes, Myers said. In addition, based on recommendations from Louisiana's Newborn Screening Advisory Committee, plans are underway to start a pilot program around the first of fiscal year 2007, which would expand newborn screening to the same recommendations. Adoption of testing for cystic fibrosis is not as far along and will occur after planning with the cystic fibrosis medical community. The state's genetics disease program offers more than just screening tests, he emphasized. It is a comprehensive system that includes follow-up and specialized care. The program cost about $4.8 million last year, covered by Medicaid, fees and state funds. The program also collaborated with the Centers for Disease Control and the University of Iowa on a project to identify infants born just before and after Hurricane Katrina, who had not been screened, to ensure that they were later tested. "I believe the expanded testing will become the standard of care in all states in the next couple of years," Myers said. "It's been a slow process, and it hasn't been easy, but it is worthwhile. These tests are lifesaving for many children," he said. Caption: Color mug of Cheri Johnson; Color photo of parents Ashli Kennedy and Joery Lands holding their daughter Alaysia Lands; B.W photo of 4 wk. old Alaysia Lands reacting to her father's smile. (by Travis Spradling) Document BATR000020060502e25100002 2008 Factiva, Inc. All rights reserved. C Sing from the heart *** Hurricane Choir's goal to raise spirits, money for relief J.D. VENTURA 979 words 7 April 2006 The Baton Rouge Advocate 1 English Copyright (c) 2006 Bell & Howell Information and Learning Company. All rights reserved. Sing from the heart *** Hurricane Choir's goal to raise spirits, money for relief Martin Meader was halfway around the world when Hurricane Katrina hit. But, like it did for so many, the storm would change his path. As a choral director and filmmaker living and working in Perth, Australia, Meader might have been like so many millions of people around the globe who only experienced Katrina from news reports. But he had some friends in Baton Rouge. After the storm had blown through, and the details were emerging about its overwhelming ferocity, he picked up the phone, desperate to reach his friends. Initially he couldn't get through. The waiting was worryfilled. Whenever he called, he would reach a confounding recording informing him that "Due to the hurricane, all circuits are busy " Finally, after much trying, his buddy answered the phone. "How bad was it?" Meader asked. "Very bad," came the answer. After learning it was as horrible as television reports had detailed, Meader's next question was, "What can we do?" What Meader "did" next would change Nick Abraham's path, too. Abraham, a mental-health counselor based in Baton Rouge and former choir director himself, had been doing work with the Volunteers of America (VOA), trying to help emergency and disaster relief workers handle their stress. He soon realized his own stress level was increasing exponentially. It was time for some relief. Through his volunteer work with the VOA, he happened to attend a local choir gathering and, after dealing firsthand with the disaster's aftermath for so many months, found singing to be amazingly therapeutic. It got him thinking. Meanwhile, back in Australia, Meader was doing more than thinking, he was planning. He would go to Louisiana and assemble a choir. He had done it before, put together huge choral groups. He knew, perhaps better than many, how powerful, say, 1,000 voices singing together could be, and just how much healing power was contained in that kind of sound. Not long after Meader arrived in Baton Rouge he partnered with the Volunteers of America. The vision took shape: the "Hurricane Choir" would involve "thousands" of voices, raising not only money for hurricane relief, but spirits. When Abraham found out what Meader was trying to do, it was like the perfect storm, with both men completely sold on the healing power of song. Things got underway quickly from there. On a recent Saturday about 70 people showed up for one of the first rehearsal sessions for the Hurricane Choir, which is supposed to have its debut on the steps of the State Capitol in a benefit concert on May 21, followed by another show on June 3 at the Baton Rouge River Center. 2008 Factiva, Inc. All rights reserved. Gathered in the Jefferson Baptist Church, the group was clearly mesmerized by Meader. It was difficult not to be. He waved his arms animatedly, loudly praising soloists, getting people to clap crazily for their choir mates and exuding a heavily accented charm somehow inherently Australian. Abraham seemed to be solidly under Meader's spell, too. When it came time to solo, the tenor's voice was forceful and full of conviction, unwavering, much like the belief the two men now share: that the relatively low turnout by no means overshadows the building interest they say the movement has acquired.