HCR 9-CONGENITAL DIAPHRAGM. HERNIA ACTION DAY  3:06:30 PM CHAIR SEATON announced that the first order of business would be HOUSE CONCURRENT RESOLUTION NO. 9, Proclaiming April 19, 2015, as Congenital Diaphragmatic Hernia Action Day. 3:06:45 PM REPRESENTATIVE CHARISSE MILLETT, Alaska State Legislature, explained that HCR 9 declared April 19, 2015, as the Congenital Diaphragmatic Hernia (CDH) day of action. She relayed that CDH occurred when a fetal diaphragm, the muscle dividing the chest and the abdominal cavity, did not close completely. It was not known what caused CDH or how to completely cure it, although 1 in 2,500 babies are diagnosed with CDH every year, with survival of only 50 percent of these babies. She noted that, although at least four families had babies diagnosed with CDH every day, it did not get very much attention. She expressed her desire that the proposed resolution would show families that they were not alone in this struggle, and would raise awareness about the devastating disease. She reported that 14 other states and 9 cities had also declared that April 19, 2015, would be acknowledged as CDH Day of Action. REPRESENTATIVE STUTES asked how many babies in the State of Alaska were born with CDH. 3:08:55 PM GRACE ABBOTT, Staff, Representative Charisse Millett, Alaska State Legislature, said that there was a representative from the Division of Public Health who would elaborate on the effect. She pointed out that, as disclosure of the disease was voluntary, the statistics were not comprehensive. REPRESENTATIVE STUTES asked whether the disease was visually apparent. REPRESENTATIVE MILLETT replied that it occurred in utero and could only be detected through testing as it was the inside of the diaphragm which did not fully develop; however, visually, the child looked normal. 3:11:00 PM CHAIR SEATON opened public testimony. REPRESENTATIVE STUTES asked how many children in Alaska annually were born with CDH. JARED PARRISH, Senior Scientist, Alaska Birth Defects Registry, Women, Children & Family Health, Division of Public Health, Department of Health and Social Services, in response to Representative Stutes, said that the data over the past eight years showed there were about 6.4 cases each year in Alaska, which was about 1 in 2,200 live births, compared to the national average of about 1 in 2,500 live births. 3:12:38 PM DAWN WILLIAMSON, President, Cherubs, said that Cherubs was the world's largest charity for families affected by CDH. She stated that the charity served more than 5,000 families in more than 60 countries. She explained that it was very severe, with only a 50 percent survival rate for the 1,600 annual births in the United States. She said that, although it was as common as cystic fibrosis and spinal bifada, most people had never heard of CDH which was the reason for the crusade for greater awareness to support more action and research funding. She explained that CDH occurred when there was a hole in the baby's diaphragm and organs could herniate upward into the chest cavity, inhibiting lung growth. She declared that this birth defect was very severe, and there was not any known cause. She reported that CDH only received a fraction of the research funding compared to other causes with similar rates of occurrence. She expressed appreciation for this acknowledgement by the legislature. CHAIR SEATON asked whether the majority of the deaths occurred after diagnosis, or because there was not a diagnosis. MS. WILLIAMSON estimated that about 85 percent of the children were diagnosed in utero with routine ultra sound, while the remainder were diagnosed at birth when the cord was cut, and the baby could not breathe. She declared that most of the deaths occurred within the first six months, as surgery was necessary soon after birth. She declared that there were only a few cases of children not diagnosed in the first few months. Until the 1990s very few children with CDH survived, the U.S. survival rate was 1 percent, because the medical technology to take care of these children at birth was not available. 3:15:56 PM TODD MEARS declared his support of the resolution and shared that his daughter had passed away from CDH. He stated that they first learned of CDH after an ultrasound at the 20-week mark of pregnancy. Although they had been told that the outcome was not promising, they chose to go ahead with the pregnancy. He shared that the ensuing hospital visits were all in Seattle, as Anchorage did not have the necessary facilities, and that his daughter only lived for 73:15:56 hours. He revealed that this was very special as it had affected his family and friends. 3:18:04 PM CHAIR SEATON closed public testimony after ascertaining no one further wished to testify. 3:18:35 PM REPRESENTATIVE FOSTER moved to report HCR 9, Version 29- LS0713\A, out of committee with individual recommendations and the accompanying zero fiscal notes. There being no objection, HCR 9 was moved from the House Health and Social Services Standing Committee. 3:19:19 PM The committee took a brief at-ease.