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  • The Newman Family(NEW YORK) -- It was a frigid February night in New York City when Magda Newman was in labor with her first child. With her husband, Russel Newman, by her side, she labored for nearly 17 hours before giving birth to their son.But when she finally delivered, the couple’s moment of expected happiness quickly turned to anguish.Magda said the room was filled with silence, and no one was saying anything to her about her newborn baby. At first, she said, she thought he was dead.“I’m like, ‘What’s going on? Is he alive? What’s going on? I want to see the baby,’” she said. “And they didn’t want to show it to me.”“I think they were scared at first,” Russel said. “Because he had no cheekbones and no upper or lower eyelids."The baby also wasn’t breathing. Magda Newman was left on the delivery table as doctors worked to save her son’s life.Russel Newman said one of the doctors called him out of the delivery room to show him a textbook. He said the doctor flipped open a page showing a black-and-white photo of a teenager with Treacher Collins syndrome. Treacher Collins is an extremely rare congenital craniofacial disorder caused by mutations in the POLR1C gene. It affects an estimated 1 in 50,000 people in the United States. The diagnosis did not show up on any of Magda’s prenatal scans -- a common occurrence in cases of Treacher Collins.“And I remember thinking, ‘That’s going to be my kid?’” he said. “It was surreal.”Nathaniel's first yearThe Newmans named their baby Nathaniel and contacted the Institute of Reconstructive Plastic Surgery (IRPS) at New York University (NYU) Langone Medical Center, a leading hospital working with children who have Treacher Collins. They left a message and, within hours, received a phone call back from Shelley Cohen, a speech and language pathologist.“She goes, ‘It’s Shelley Cohen. Congratulations,'" Russel said.“That was the first person who said to us, ‘Congratulations,’” Magda said.Before Russel could say anything else, Cohen said to him, “Hey, Mr. Newman, you had a baby boy, I heard. That's wonderful.”“And I remember going, ‘Are you freaking nuts?’” Russel said. “And she said, ‘Let me just tell you -- your son is going to live a long, healthy, happy, wonderful life.’ And I believed her.”Nathaniel was transferred to the neonatal intensive care unit at NYU, where he spent the first month of his life. Pat Chibbaro, a pediatric nurse practitioner who worked with the Newmans, said they were “absolutely devastated.”But shortly after Nathaniel was born, the Newmans said something unexpected happened that sustained them through the early days and then the years ahead. While still reeling from the trauma of his birth, Russel and Magda Newman found themselves alone in a hospital room watching the Grammys. The show opened with Christina Aguilera singing her song, ‘Beautiful.’ It became a beacon of hope for them.“I swear she was singing to us that night, I swear, as cheesy as that sounds,” Russel said. “That song just resonated.”“We decided he's going to be beautiful not because of his appearance, because of his personality,” Magda added. “He's going to be a beautiful person.”The couple said they decided right then to get out of bed and go down to the NICU to see their son.“And we held Nathaniel for the first time,” Russel said, through tears. “And it was awesome. And then the journey started.”Magda said it took a year before she could look at her son without flinching.“I almost cried every day,” she said. “Every single time I looked at him, I could not believe it’s my child. I couldn’t believe it.”In Nathaniel’s case, his
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  • Ingram Publishing/Thinkstock(NEW YORK) -- In a groundbreaking decision on Monday, the Food and Drug Administration approved a drug with a “digital ingestion tracking system,” which senses when a pill is swallowed and sends the data to a smartphone.The new drug-device combination product called Abilify MyCite is approved for the treatment of schizophrenia and mood disorders. The Abilify (aripiprazole) tablets come embedded with an ingestible event marker (IEM) sensor -- the size of a grain of sand -- that sends information to a patch the patient wears. The patch then transmits the data to smartphones and online health care portals, which can be accessed by health care professionals and caregivers if the patient approves.This new concept could mean significant advancements in treatment for many disorders, specifically psychiatric illnesses, which rely heavily on patients who must consistently take their medication if they are to achieve stability.Schizophrenia, a chronic psychiatric disorder, affects approximately 1 percent of the U.S. population. The disabling condition includes delusions, thought disorders and hallucinations that can ruin jobs, relationships and day-to-day functions. People with schizophrenia have the greatest success in treatment if they take their medications.This, however, can be difficult. If they don’t take the medication, they relapse, are re-hospitalized and have to start over again. It’s both disturbing to their lives and an extra expense for them to carry.Psychiatric diseases are not the only illnesses that may benefit from a drug-device. This way to track medications could help manage a variety of chronic illnesses.Approximately half of all people with heart disease, for instance, don’t take their medication regularly. For patients with diabetes, studies show that hospital costs are 41 percent higher every year for those who don’t take their medication as directed, compared to those who do.In general, medication “non-adherence” results in additional cost to the U.S. health care system of $290 billion annually.While the potential benefits are easy to see, these pharmacological strides also raise concerns about diminished patient autonomy and suspicion of the medical system. Now, it’s the patient who controls who has access to this electronic data. But this type of system could erode the trust traditionally shared between the physician and patient. That trust is particularly important for patients with psychiatric diseases.“I would want a study conducted to see how the technology impacts the doctor-patient relationship,” said Dr. Paul Applebaum, director of the Division of Law, Ethics and Psychiatry at Columbia University. “What kind of message are we communicating?”It is also important to note that the improvement in patient compliance with treatment is the ideal outcome, but so far nobody has shown that this pill will do it.Applebaum sees how the new technology may prove beneficial in certain populations, such as “patients with early dementia, since the culprit for non-adherence is memory.”However, he notes it may not be as effective in patients who are worried about side effects or have other common reasons for not taking their prescriptions.Sandy Walsh, a spokesperson for the FDA, said “it is too soon to gauge” what implications this may have on a broader scale.However, she points out that “the FDA supports the development and use of new technology in prescription drugs and is committed to working with companies to understand how technology might benefit patients and prescribers.”Copyright © 2017, ABC Radio. All rights reserved.
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  • iStock/Thinkstock(NEW YORK) -- U.S. Attorney General Jeff Sessions is being sued by a 12-year-old Colorado girl suffering from epilepsy who aims to legalize medical marijuana nationwide.Alexis Bortell, along with her father and other plaintiffs, including former NFL player Marvin Washington, filed suit in the Southern District of New York against the attorney general as well as the Department of Justice and the Drug Enforcement Agency.Many states now allow use of marijuana for at least some medical reasons. The lawsuit filed in July seeks to make medical marijuana legal across the U.S."This lawsuit stands to benefit tens of millions of Americans who require, but are unable to safely obtain, cannabis for the treatment of their illnesses, diseases and medical conditions," the suit states.Alexis, whose family moved to Colorado from Texas to take advantage of the state’s legalization of recreational and medical marijuana, had been suffering since she was 7 from a form of epilepsy that cannot be safely controlled with FDA-approved treatments and procedures, the lawsuit says.As a result, she often had multiple seizures a day. "Nothing she tried worked," the suit states. When her family finally tried a form of marijuana, the girl found "immediate relief from her seizures.""Since being on whole-plant medical cannabis, Alexis has gone more than two years seizure-free," the suit says.The suit contends that Alexis won’t be able to return to her native Texas -- where she hopes to attend college -- because she would be subject to arrest if she continued to use marijuana to control her seizures.ABC News reached out to the Justice Department for comment on the lawsuit but did not get an immediate response. Copyright © 2017, ABC Radio. All rights reserved.
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  • Patricia Garamendi(NEW YORK) -- Cornell economist Chris Barrett sometimes shows audiences a photo he took in 2003 of a mother in Kenya holding her thin child.“He's so undernourished,” said Barrett, whose field research has spanned sub-Saharan Africa.Roughly 815 million people around the world suffered from chronic malnourishment last year alone, according to the Food and Agriculture Organization of the United Nations.The way the U.S. helps the world’s hungry could be impacted by potential changes to provisions in the upcoming 2018 Farm Bill, particularly those regarding international food assistance programs.Food for Peace Title II aid connects farmers, truckers and others in the agricultural industry to programs that ship food to the world’s hungry.Another effort, the Emergency Food Security Program, helps provide cash-based assistance for food to be bought in the region it will be consumed.Because the 2014 Farm Bill is set to expire next year, lawmakers could soon debate which type of assistance the U.S. should best provide.It is a disagreement that has roiled academics, lobbyists and politicians.Same goal, different methodsThe United States is by far the most generous contributor to international food aid. Every year for the past decade, the U.S. gave between two and five times more funding to the U.N.’s World Food Program than the next largest donor.But American food aid is bound by restrictions that don’t apply to other major donor nations.For example, at least 50 percent of food aid sent abroad must be delivered by U.S.-owned and -crewed vessels, even though they typically cost more than foreign alternatives.In 2015, the Government Accountability Office found the added expense of this policy, known as cargo preference, was more than $107 million -- three times what the U.S. spent on food assistance to the African nation of Chad in 2017.Barrett suggested that current maritime restrictions on shipping food aid should be eliminated.Rep. John Garamendi, a Democrat from California, who sits on the House Transportation and Infrastructure committee, disagrees."Well, I suspect that the opponents of cargo preference generally believe that if you send cash, it is better, cheaper and provides more support,” said Garamendi, the ranking member of the Coast Guard and Maritime Transportation subcommittee. “For the most part, those who advocate that have never spent much time in the chaos of a refugee or a famine camp.”Hunger is an issue that has shaped his life’s work.He has worked for decades on the issue, including a stint in Ethiopia with the Peace Corps in the early 1960s. In the late 1990s, he returned to Ethiopia with his wife, Patti, who then ran food programs across Africa for the U.S. Department of Agriculture.An alternative modelMost countries have turned away from shipping home-grown commodities to afflicted regions, opting instead to provide funds for purchasing food locally.In October, Barrett testified before the Senate Foreign Relations committee that Canada, which did away with a requirement that a percentage of food it donates must be domestically produced in 2008, is now twice as efficient as America at getting food to the needy.Garamendi fears that replacing U.S. food aid sourced from American farms and delivered by U.S. ships with monetary aid would lead to abuse and undermine the nation’s commitment to feed the hungry.“A cash program just will not have that support, and will quickly be subject to the inevitable audits, the inevitable questions of where did the cash go? Why did they use it to buy guns?” he said, adding that it wouldn’t be long until American food programs would diminish and possibly disappear.The 2014 Farm Bill allowed more American food aid to be obtained outside the U.S. It was a change applauded by advocates who said shipping food from the U.S. to a nation in need is not always the most efficient way to feed peopl
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  • ABC News(LONDON) -- A London woman is using her maternity leave for her second child to travel the world with her family.Karen Edwards, 33, is traveling through the U.S., Central America and South America with her husband, Shaun Bayes; their daughter, Esmé, 3; and 4-month-old son, Quinn. Edwards also took maternity leave after her daughter's birth in 2014 to travel the world.The family left London on their monthslong adventure when Quinn was just 9 weeks old.“It’s actually easier than being at home because at home you've got so much more things to do in just running a household,” Edwards told ABC News. “We’re really happy with what we're doing.”The family visited Spain and Canada and drove down the West Coast of the U.S. before visiting Belize, Guatemala and El Salvador.They’ve stayed in beach cabanas, camper vans, hotels and with local families along the way.“I do believe that it's definitely character-building,” Edwards said, adding that Quinn “doesn't blink an eyelid” to being in a new bedroom almost nightly.Quinn has already visited seven countries in his four months of life, while Esmé has visited nearly 30 countries at age 3.Edwards and Bayes decided, after Edwards unexpectedly became pregnant with Esmé, they would keep traveling as they’d loved to do as a couple.When Esmé was 10 weeks old, the family left London for Bayes’ native New Zealand and then traveled throughout Southeast Asia.Edwards, a nurse manager at a London hospital, receives full or partial payment through nine months of maternity leave. The last three months of her leave are unpaid, but the family rents out their house in London to help cover expenses.Bayes works in construction and has flexibility with his work schedule.Edwards said the great experience spending a year traveling with Esmé inspired her and Bayes to do the same with Quinn.“The most enjoyable bit was just having unlimited time for Esmé and seeing her developing without having many distractions,” she said. “We didn't have a house to maintain and we didn't have errands to run, so it was just her and us two parents being parents.”Edwards and Bayes started a blog where they document their travels with their kids."Most of the [reaction] is positive and heartwarming, that we've inspired them to do something similar," Edwards said.The family has faced criticisms for exposing their kids to foreign countries at such a young age. Edwards reminds critics that she is a nurse and they take “all necessary precautions.”“This is the thing: we were already really into traveling,” Edwards said. “If it's something that you really enjoy anyway, you want to pass that onto your kid in some way.”
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