Fighting for Children’s Lives

Two recent stories in the news offer views on parents’ fights to save the lives of children through medical intervention and technology. One shows the now-hopeless struggle of parents to get their child experimental treatment. The other demonstrates how a mother is providing hope for parents desperately needing care for their newborns.

Most people are familiar with Charlie Gard’s dire situation and his parents’ fight for experimental treatment. Charlie has a rare genetic condition. His parents have fought England’s National Health Service, the British courts, and the European Court of Human Rights to allow them to bring Charlie to America for experimental treatment that offers a sliver of hope. Despite raising over a million pounds to help pay for the treatment in the US, the various courts denied the parents’ bid to bring their child to the US. This healthcare decision strips the rights of an infant’s parents and places such decisions in the hands of hospital administrators and judges. The case offers more questions than answers. What does it portend for parents who want a say in the treatment options for their children? What are the implications for parents’ rights when judges are able to tell doctors to stop treatment even though the parents object and have the money to pay for the treatment they desire? How much worse will such situations be for those who desire treatment but cannot afford it? Take a look at this BBC article and this piece from The Washington Post for more information.

Meanwhile, another story shows a mother’s fight to save the lives of children halfway around the world. Dr. Rebecca Richards-Kortum, a professor in the bioengineering department at Rice University, used the proceeds from a MacArthur genius grant to develop low-cost technology to diagnose cancer quickly and easily in isolated areas of the world. Along with her campus organization, the Rice 360° Institute for Global Health, she is now a semifinalist for a $100 million MacArthur grant to address newborn death rates in sub-Saharan Africa. She and her team have already developed life-saving devices including a machine to improve the airflow into children’s lungs. The respiratory machine sells for a fraction of the price of similar machines in the developed world and has increased the survival rate of babies with respiratory distress. Her work is inspired by a research trip to Malawi where she saw babies in ill-equipped hospitals, “She saw things…from two perspectives: as an engineer and as a mother.” Her perspective as a mother inspires her to work to save other children, and her work gives hope to parents who desperately need better care for their children in the developing world. Check out this profile in The Wall Street Journal to learn more about Dr. Richards-Kortum’s work.

 

Weekly Roundup

Attention-deficit/hyperactivity disorder is linked to delayed brain development, The Washington Post

For the first time, scientists can point to substantial empirical evidence that people with attention-deficit/hyperactivity disorder have brain structures that differ from those of people without ADHD. The common disorder, they conclude, should be considered a problem of delayed brain maturation and not, as it is often portrayed, a problem of motivation or parenting. Read more.

Depression Strikes Today’s Teen Girls Especially Hard, NPR

It’s tough to be a teenager. Hormones kick in, peer pressures escalate and academic expectations loom large. Kids become more aware of their environment in the teen years — down the block and online. The whole mix of changes can increase stress, anxiety and the risk of depression among all teens, research has long shown.

But a recent study published in the journal Pediatrics suggests many more teenage girls in the U.S. may be experiencing major depressive episodes at this age than boys. And the numbers of teens affected took a particularly big jump after 2011, the scientists note, suggesting that the increasing dependence on social media by this age group may be exacerbating the problem. Read more.

School district chiefs: Proposed Medicaid changes would hurt poor children and students with disabilities, The Washington Post

A new survey of school district leaders across the country finds that they are deeply worried that Republican proposals to refinance Medicaid, if they become law, would hurt students who live in poverty and those with disabilities and in special education. Read more.

Student Discipline in Schools: Part of the Problem or the Solution?, Campus Safety

More and more school districts and local officials around the country are considering revising their student disciplinary policies.

The efforts reflect a change in the approach to fostering a positive school climate that has gained support as additional research has come out on the impact on certain punishments on children.

An increasing number of organizations have begun supporting alternatives to long-used methods of student punishment like expulsion, suspension, restraint and seclusion.

Most notably, the Department of Education has begun actively promoting school environments that are safe, supportive and conductive to learning. Read more.

Study: Listening to youths could improve justice system, TribLive

Allegheny County could improve its juvenile justice system — along with the lives of the region’s poorest and most vulnerable children — by doing more to listen to juvenile offenders, identify disruptions in their home lives and incorporate their input into policymaking, a report published Monday found.

The Pittsburgh Foundation announced the completion of an eight-month study that involved partnering with community-based nonprofits to interview 53 youths and young adults with former or active cases in the county’s juvenile justice system. Foundation officials expect the 31-page report’s findings to spur grantmaking opportunities and community partnerships. Read more.

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Weekly Roundup

Minority juvenile offenders face inequities in mental health treatment, The Dallas Morning News

Every day, our jails and prisons take in large numbers of offenders who have serious mental health issues. But how good are we in diagnosing and treating their illnesses? Traditionally, not very good, and the record gets worse with respect to providing the most appropriate treatment. And as a recent study that I was part of published in the Journal of Youth & Adolescence showed, it is even more distressing when we examined diagnosis and treatment among racial/ethnic groups. Read more.

Youth advocates alarmed by proposed pharmacy robbery bill, Indianapolis Reporter

A proposed amendment that would automatically move certain juvenile robbery suspects to adult court is raising alarm among youth advocates.

Senate Bill 170, written by Republican State Sen. Michael Young, who represents District 35, would amend the so-called “direct file statute” to include pharmacy robbery among the list of juvenile offenses sent directly to adult court. That list currently includes attempted murder, murder, rape and other crimes. In the law’s current iteration, robbery is only included in the statute if it involves a deadly weapon or bodily injury. Read more.

Obama’s Legacy on Child Welfare and Juvenile Justice, Social Justice Solutions

President Barack Obama exits stage right on Friday after presiding over one of the most interesting periods in American history. He leaves with a high approval rating, yet transfers power to a man who vows to undo much of the work done by his administration.

Child welfare and juvenile justice were decidedly not front and center for this administration, or any of the administrations that came before it. But Obama will leave office with a legacy of action in both realms. Read more.

Being incarcerated as a juvenile tied to poor health years later, Reuters

People incarcerated as juveniles may have worse physical and mental health as adults than youths who did not spend time in detention centers or correctional facilities, according to a new study. Read more.

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