About 3,000 infants are born each year with single-ventricle heart defects. While that’s a relatively small number, for the newborns’ families the diagnosis can be devastating, says Dr. Girish Shirali, co-director of the Ward Family Heart Center at Children’s Mercy Hospital in Kansas City. “It’s very difficult for families, because nobody expects this. So it kind of comes like a bolt from the blue,” he says. These infants have underdeveloped lower heart chambers, or chambers that are missing a valve. They typically need three major heart surgeries to redirect blood circulation, including one within a few days of birth. The period between that surgery and the second one a few months later is perilous. As many as one in five newborns with the diagnosis die in the first few months of life, and their condition needs to be carefully tracked and recorded for danger signs. During that critical time, it’s usually up to the parents to closely track their babies’ oxygen saturation levels and weight at home. “One of our concerns has been just the amount of stress that that puts on the families, because the responsibility is kind of now shifted on to them,” Shirali says. In the past, when parents of newborns with single-ventricle heart defects left the hospital, they usually brought home both their baby and a big, clunky three-ring binder. But at an American Heart Association conference today in Chicago, Shirali will introduce a tablet-based app that could make a big difference in monitoring and treating these conditions. The app, created by Children’s Mercy researchers, is…...

Cerner Corp., the Kansas City-based health care information technology giant, broke ground Wednesday on its huge campus in south Kansas City, Mo., a project that’s eventually expected to house as many as 16,000 workers. Cerner officials, along with Missouri Governor Jay Nixon and Kansas City mayor Sly James, took part in the ceremony at the site of the now-demolished Bannister Mall, once one of the area’s biggest shopping centers. The mall closed in 2007 and was torn down in 2009. “If you had told somebody five years ago that an old and blighted shopping center, full of nothing but empty parking lots, deserted after decades of decline, would one day be home to the largest development project in the history of our great state, with more than $4.4 billion in investment and 16,000 high-paying jobs on the way, they would’ve said it was impossible,” Nixon said. James called the project “not only pivotal” but “catalytic.” “It’s not only going to be these buildings, but it will spur other development of retail around the development itself,” he said. Cerner’s plans call for a 4.7 million-square-foot office complex consisting of 16 buildings on 290 acres to be built in 16 phases. The complex will dwarf the company’s current 1.4 million-square-foot headquarters in North Kansas City. By comparison, Sprint Corp.’s campus in Overland Park includes 3.9 million square feet. Completion of the entire project could take up to a decade although the first phase is expected to be completed by 2016. The company says the project, not far from the former Marion Labs…...

Making the rounds at a public housing complex in Kansas City, Kan., community health worker Rinzin Wangmo is greeted by cheery voices and faces. As she enters a home, the heavy aroma of chopped onions stings her nose, and she hurries up a short flight of stairs to escape the burn. After gently knocking on a door, she walks in to meet with a woman who’s bedridden with pain. The woman’s condition is not unusual among Bhutanese refugees, according to University of Kansas professor Dr. Joe LeMaster. “They went through quite a lot, and that has had its mark on them, there is no question about that,” LeMaster says. The community health specialist, who worked for a decade in the Himalayas, has been working for the past several years to address the unique challenges of Bhutanese refugees, and in particular their striking rates of mental illness. For hundreds of years, Nepali people lived and worked in southern Bhutan, a country that earned notoriety in the 1970s when its king introduced the “national happiness index” as an alternative to the more traditional measure of prosperity, the gross domestic product. But in the early 1990s, a government campaign of harassment and what Human Rights Watch has described as ethnic cleansing led tens of thousands of Nepalis to flee to refugee camps in Nepal. In 2006, the United States offered to resettle some of the refugees. Since then, more than 75,000 have arrived in cities like Philadelphia, Denver and Kansas City. A long journey Jenga Chhetri was 23 when he convinced his family…...

(Video by Todd Feeback/The Hale Center for Journalism) If the idea of music therapy brings to mind 1960s-era folk singers warbling to bemused patients, you haven’t seen Deanna Hanson-Abromeit at work. At Operation Breakthrough in Kansas City, Missouri, the University of Kansas assistant professor sings a good morning song to Daren, a curious, if slightly cautious, infant. The tune is a simple one, and the singer bubbles over with enthusiasm, but her musical interventions are more of a conversation than a performance. But it's also research. Hanson-Abromeit is leading an international effort to create a protocol for using music therapy to help premature infants survive and thrive. In her session with Daren, she engages completely with his every movement, playing to her one-person audience in a way that might put Al Green to shame. She watches his eyes and head while making constant changes to the music’s volume and tempo, trying to engage the baby’s attention. Before the end of the second verse, Daren breaks into a big smile. Struggling for respect When Hanson-Abromeit first started studying music therapy in the early 1990s, she got a warning from her college adviser: have a back-up plan. At the time, music therapy was struggling for respect, and many therapists ended up working as music teachers. But the field has changed dramatically in the past few years, and now the KU academic is considered one of the leading researchers working with premature babies. “When we’re born a full-term infant, we can see, but our vision is protected is a way that we don’t…...

Twenty hospitals in the Kansas City area will be penalized by Medicare starting Oct. 1 for excessive readmissions, although eight of them will be hit with lower fines than in Medicare’s previous round of penalties.

A new program in Kansas aims to improve conditions in prisons, but it’s not for inmates. The state Department of Corrections is one of many prison and jail systems around the country working to overcome “correctional fatigue” — the mental and physical stress that lead to corrections workers burning out. From Orange Is The New Black to Shawshank Redemption to Cool Hand Luke, prison guards often have gotten a bad rap as some of the worst bullies featured on television and in the movies. And that rankles John Bates. “You never see any correctional officer heroes. All you ever see is the bosses, the Boss Hoggs,” Bates said. Bates has spent more than a decade working as a correctional officer in one of Kansas’s major prisons; he asked that it not be identified. On a recent afternoon off, he said he sees corrections as a way to keep the public safe and improve inmates’ lives. But it’s work that comes with nearly constant stress. “There’s a great deal of distrust by the inmate population towards staff which sometimes ends up in violence, sometimes ends up with nothing more than obscenities. But it is quite difficult dealing with inmates on a daily basis.” Bates said. Not just a job Those challenges aren’t unique to Kansas. “Everyone figures ‘Ah, it’s just a job.’ Well, it isn’t just a job to go to work every day having to wear a raincoat so you don’t get piss and vomit and excrement and semen and mucus thrown at you,” said Brian Dawe, executive director of…...

Call them e-cigarettes, vapes, e-juices or e-liquids. Just don’t call them tobacco. Early last Thursday, Missouri legislators overwhelmingly overrode the governor’s veto of a bill governing electronic cigarettes and the nicotine-infused mixtures they deliver. While the new law bans sales to minors, it also prevents e-cigarettes from being classified as "tobacco products." “It was operating under the guise of protecting youth, but really it just created a special carve-out for a special interest,” said Traci Kennedy, executive director of Tobacco-Free Missouri. Tobacco-Free Missouri opposed the law, along with the American Cancer Society, the American Heart Association and other health groups. While the law doesn’t plainly forbid regulation of e-cigarettes, these groups point out that, by defining e-cigarettes as not tobacco, it keeps them from being subject to the same taxes and health-requirements as traditional cigarettes. A.J. Moll, on the other hand, celebrated the law’s final approval. “This new law sends the message that Missouri is not for sale to heavily funded special interest health groups," said Moll, vice president of media relations for the Bistate Regional Advocates for Vaping Education, which operates in Illinois and Missouri. Moll's group, along with many e-cigarette retailers, support the law and its ban on sales to minors. He said it’s too soon for additional regulations because not enough is known about the health effects of e-cigarettes. But while the debate in Missouri seems to be settled, there’s a big cloud forming on the e-cigarette horizon. The Food and Drug Administration is considering a rule that would take a very different approach to e-cigarettes. In…...

Carlo Cavallaro pours a brown liquid into a device that looks a little like a Star Trek phaser. When it hits battery-heated coils, the liquid sizzles and turns into vapor. He takes a big draw and exhales a sugary-smelling cloud. Cavallaro makes his own custom nicotine-infused e-cigarette juice. “This one that I have here is a fudge brownie,” he says. E-cigarettes have only been around the United States for about seven years, and during that time they have been left largely unregulated by the federal government or most state governments, including Missouri. The independent e-cigarette makers, as well as enthusiasts like Cavallaro, have reveled in the freedom to experiment with devices and flavors, making the vaping industry pretty much whatever they want it to be. So it might seem surprising that e-cigarette advocacy groups have been pushing for one regulation. “We want to make sure that minors don’t get these products in their hands,” says A.J. Moll of  the Bistate Regional Advocates for Vaping Education, or BRAVE, which works in Missouri and Illinois. With support from e-cigarette companies and retailers, Missouri lawmakers overwhelming passed a bill last session that would have banned the sale of e-cigarettes to minors. Moll was irate when Governor Jay Nixon vetoed it in July. “He could’ve insured the safety of Missouri’s children by simply signing what we feel is a common sense bill,” he says. To regulate or not to regulate But Nixon said the issue wasn’t quite that simple. In a letter to the secretary of state, the governor said he would support a…...

When Steve Jobs needed a liver transplant in 2009, the Apple CEO left California and went to Memphis, Tenn. While his home state has some of the longest waiting lists in the country for donated livers, Tennessee has some of the shortest. Many health advocates point to Jobs’ story as an example of the harsh disparities faced by those who need new livers in different parts of the country. Plans are in the works to fix those disparities, but some Kansas City doctors worry about what a shake-up would mean for local hospitals and patients. Waiting for a liver After living for years with Hepatitis C, 56-year-old retired pediatric nurse Marcy Quarles was diagnosed with liver cancer in 2013. In March, she was placed on the waiting list for a transplant. “I sit here and I try to think positive about everything,” she says. “And I carry my phone with me constantly because I just know that I’m gonna get that call any minute, and that’s what I wait for.” Quarles is staying in a bed at the University of Kansas Hospital, anticipating the day she gets a new liver. “I just feel like I’m going to be happy and healthy,” she says, “and I’m going to be able to live out the rest of my life. I just imagine really good things to happen.” But change is coming to the way donated livers are allocated in the United States, and Richard Gilroy, a hepatologist and medical director of transplantation at KU Hospital, says that's not good news for those on waiting lists in Kansas and Missouri. “Bottom…...

This Friday is National HIV Testing Day, first created almost 20 years ago to encourage members of the public to learn their HIV status. Since then, what it means to be HIV-positive has changed dramatically. Individuals diagnosed as positive today can expect to live as long as they would without the virus, as long as they receive treatment. But many HIV patients, especially in African American communities, don't receive the treatment they need, and health advocates blame that on the stigma associated with HIV and AIDS. In Kansas City, a new art exhibition aims to erase that stigma. Facing Diagnosis August 18, 2010, is a date Kaylon Sanders will probably never forget. It's the day he found out he was HIV-positive. Because of a communication mix-up, he didn't hear the news in a doctor’s or counselor’s office. Instead, he got the news over the phone, while he was at work. “That was very difficult,” Sander says. “Especially for the setting, 'cause I actually shared my office with someone else. And so I’m like, ‘OK. Uh huh.’ You’re trying to be professional and not break down.” He got in touch with his doctor, but it wasn't long before he was in denial about the seriousness of his condition. Like 40 percent of those who know they are HIV-positive, he didn’t follow the prescribed treatment regimen. “I didn’t get on medication,” Sanders says. “My counts were fine, so I kind of blocked it a little bit. I knew I had it, I knew I was still healthy, so I didn’t kind of…...

Despite the well-known risks, rates of smoking have remained stubbornly high in Missouri – about 25 percent of adults, compared with 18 percent nationally. In Kansas City public housing, the problem is even worse, with smokers comprising 40 percent of all tenants. That high rate is especially disturbing to health advocates because of the high numbers of vulnerable people, particularly children, the disabled and elderly, who live in public housing. A new policy aims to do away with smoking in city-owned housing, but many residents are not pleased. On a breezy Friday afternoon at Guinotte Manor, a public housing subdivision northeast of downtown, Kerrie Terry lights a cigarette and fumes over the changes coming to her building. “It’s BS,” she says. “It’s against our legal rights as a U.S. citizen.” After a year and a half of planning and asking for comments, the Housing Authority of Kansas City, Mo., made it official earlier this month: a smoking ban – both inside and outside Housing Authority properties - will go into effect July 1,  affecting more than 5,000 people living in about 1,750 apartments and houses. People in the Housing Choice Voucher Program, or what used to be called Section 8 Housing, won’t be affected. Under that program, residents receive vouchers to live in privately-owned buildings. The U.S. Department of Housing and Urban Development first encouraged local housing authorities to ban smoking in 2009. Today, more than 600, or 20 percent, of housing authorities in the United States have done so, according to Jim Bergman, director of the Smoke-Free Environments Law…...

Missouri has a distinction that troubles many involved in public health: It's the only state in the country that does not monitor prescription drugs. Some say that heightens the problem of prescription drug abuse. Missouri legislators are trying to create a drug monitoring system, but concerns over privacy have stirred opposition. Rising abuse Since the 1920s, the Spalitto family has owned and operated a pharmacy northeast of downtown Kansas City, Mo. The neighborhood has undergone a lot of changes over the years – not all of them for the good, says pharmacist Pete Spalitto. “Drug abuse and IV drug abuse. Prostitution down here on 5th and Cleveland. I’ve seen a lot of things,” he says. Some trouble comes walking right through Spalitto’s door. In recent years, he has seen many people he thinks may be abusing prescription drugs. “I think every pharmacy in the country has a certain amount of individuals that you service where you question whether the prescription is being used the way that it should be,” Spalitto says. Painkillers, particularly Vicodin and Oxycontin, are the mostly commonly abused prescription drugs in Missouri, followed by the anti-anxiety drug Xanax, according to the Missouri Department of Mental Health. The Missouri Recovery Network, a nonprofit group that provides recovery support, describes the behavior of some abusers as “doctor shopping”- going from doctor to doctor and pharmacy to pharmacy to stock up on prescription drugs. For the past several years, legislators like Republican Rep. Kevin Engler of Farmington have been working to stop the abuse. “Because it’s killing people in my…...

Alex Smith — KCUR Kansas Gov. Sam Brownback announced bonding authority Monday morning to help fund the construction of a new University of Kansas Medical Center education building. The funding comes as part of a school funding measure the governor signed into law Monday afternoon. The measure was approved by lawmakers on April 6. The bonds will raise $25 million of the $75 million needed to construct the building. KU officials say the new building is needed to replace outdated facilities and adapt to newer teaching methods. At a press conference on the Kansas City, Kan., campus on Monday morning, Brownback said the building would allow the school to create 50 new slots for medical students between the Kansas City and Wichita campuses. The governor praised the school and its growth in academic rankings. “We always know where our basketball, our football teams are ranked,” he said. “We should be as focused too on how our higher education institutions, like our medical school, law school, veterinary school and other are ranked.” Sen. Laura Kelly, from Topeka expressed concern that the plan could ultimately leave the University of Kansas to repay the bonds. Kelly, who’s the ranking Democrat of the Senate’s budget writing committee, pointed out that the bonds could be repaid by either the state general fund or the university. “I’m not sure they’re going to be able to issue these bonds,” Kelly said. “I certainly wouldn’t feel comfortable with no guarantee of state general fund payback. I think it’s mighty risky unless they do a heck of a fundraising…...

By Alex Smith - KCUR Every parent knows that young children have meltdowns now and then - at home, at school, in the grocery store - but sometimes a tantrum can be more than a bad day. It can be the sign of traumatic stress. A program started in Kansas City, Kan., offers teachers and parents an alternate way to deal with intense emotions and potentially avoid the long-term impact of trauma. The program has been spreading in recent months, even getting national attention. In the basement of Wyandotte United Methodist Church in Kansas City, Kan., teacher Twakisha Jones leads her small preschool class through a song. They are a cheery bunch, but Jones recognizes that some of her young students deal with a lot in their lives. “We don’t know what things happen at home,” Jones explains. “But when they come in, they come in with all kinds of problems - I mean - if you watch different things that happen in neighborhoods, especially being low-income families.” Trauma explained Trauma can take the form of abuse or violence, but trauma can also be less direct, including experiences like neglect or witnessing violence. To some degree, trauma effects one in four children in the United States, according to the local creators of a program designed to address the problem. Head Start Trauma Smart was developed by Crittenton Children’s Center, part of the St. Luke’s Health System of Kansas City. It got off the ground in Wyandotte County preschools in 2008. Avis Smith, who directs the program, says that the standard…...

Alex Smith — KCUR Health and Human Services Secretary Kathleen Sebelius urged the uninsured to enroll in the federal health exchange at a press conference in Kansas City, Mo., Monday morning. At the Full Employment Council near 18th and Vine, Sebelius touted the benefits of the health exchange for both the uninsured and for the metro area. Sebelius said that about 250,000 in the Kansas City metro area are uninsured and eligible to enroll for health insurance on the federal health exchange. About 80 percent of those eligible uninsured would qualify for subsidies to help pay for insurance. Sebelius acknowledged the troubled start of the federal health exchange website, healthcare.gov, but said significant improvements had been made. She described a “surge” of enrollment since the end of November, after the website was fixed. “People, if they had an early experience, should come back to the site because we’re enrolling thousands of people every day,” Sebelius said. She also advised that the uninsured could enroll on a 24/7 phone hotline; by mail; or in-person with a local navigator, certified application counselor, agent or broker. The latest numbers from the Centers for Medicare and Medicaid, released Jan. 13, show that 7,475 people in Kansas and 33,138 people in Missouri had enrolled in insurance plans on the exchange as of Dec. 28, 2013. Sebelius introduced local business owner Lynn Gardner Hinkle, who had recently enrolled for insurance, to the crowd. Hinkle said she had twice undergone surgery to treat melanoma. In the past, an insurer might have declined to cover someone with a…...