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 Round Up

www.forcesociety.com

ExtractAdam Foss wants to reinvent the cycle that defines the American criminal justice system. The former Boston-area prosecutor spent more than six years as an assistant district attorney, mostly working in the juvenile division. Prosecutors, he said, play a pivotal role in our justice system — they wield the power to offer alternative sentencing and diversion programs for young people. According to Foss, prison isn’t always the answer. Globally, the U.S. incarcerates people at a higher rate than any other country, with more than 2.2 million individuals currently behind bars. It’s a phenomenon that affects blacks and Latinos at a vastly disproportionate rate than white offenders.”

[…]

“Prosecutor Integrity and Legend’s #FreeAmerica campaign are part of a larger, growing movement among the creative community to tackle America’s mass incarceration epidemic. Of the millions of youth arrested each year, 95 percent are arrested for nonviolent crimes, including truancy, “criminal mischief” and other low level offenses. These are offenses that, all too often, land black and brown youth in court, stigmatizing minors with cases that aren’t worthy of a criminal record.”

Extract “Although certain kinds of crimes may rise during the summer months — for juveniles it may be crimes such as theft of bikes, there isn’t enough solid national data to suggest that summer crime waves among juveniles are a real source of concern. And contrary to popular belief, the spike in crime typically doesn’t happen after curfew. Although the spike in violent crime by juvenile offenders tends to happen at 3 pm on school days and 7 to 9 pm on non-school days, 63 percent of violent crimes happen on school days according to U.S. Department of Justice data.

To make matters worse, although this kind of summer activity is pretty common across race and social class, according to a paper from the Annie Casey Foundation, the kids being penalized for it are usually low-income and children of color. That’s because curfew laws are enforced in predominantly black and Hispanic and low-income neighborhoods.”

“The Gambia and Tanzania have banned child marriage, with tough penalties for those who breach the rulings. Gambia’s President Yayha Jammeh announced that anyone marrying a girl below 18 would be jailed for up to 20 years. In Tanzania, the high court imposed a landmark ruling outlawing marriage under the age of 18 for boys and girls. Some 30% of underage girls are married in The Gambia, while in Tanzania the rate is 37%.Before the Tanzania ruling, girls as young as 14 could marry with parental consent, while it was 18 for boys. The BBC’s Tulanana Bohela in Dar es Salaam says this is a big win for child rights groups and activists, who will now have an easier time rescuing girls from child marriage. The case was brought by lobby group Msichana Initiative. Gambia’s President speaking at the Eid-ul-Fitr celebrations at the end of Ramadan, said parents and imams who perform the ceremonies would also face prison. “If you want to know whether what I am saying is true or not, try it tomorrow and see,” he warned. Women’s rights campaigners have welcomed the ban, however some say that it would be better to engage with local communities to try to change attitudes towards child marriage instead of threatening families with prison sentences, “I don’t think locking parents up is the answer… it could lead to a major backlash and sabotage the ban,” Isatou Jeng of the women’s rights organisation Girls Agenda told the Thomson Reuters Foundation by phone from the Gambian capital, Banjul. In December last year, Mr Jammeh also outlawed female genital mutilation (FGM), with a prison sentence of up to three years for those that ignored the ban. He said the practice had no place in Islam or in modern society. Three-quarters of women in the mostly Muslim country have had the procedure, according to Unicef.

Adverse Childhood Experiences

Adverse childhood experiences (ACEs) impact an individual long-term. Dr. Vince Felitti from Kaiser Permanente and Dr. Bob Anda from the Centers for Disease Control and Prevention (CDC) conducted a research to study how childhood trauma impacts health outcomes. In their investigation, they tracked the number of ACEs of over seventeen thousand individuals and then compared these to the participants’ health outcomes. The study has shown a correlation between adverse childhood experiences and the health and social problems an individual encounters over his or her lifetime.

The potential ill effects of childhood trauma are troubling. ACEs can dramatically increase the risk for seven out of ten of the leading causes of death in the United States. Childhood trauma can impact the development of the brain and the immune system. There are also findings that individuals who experienced childhood trauma are at a triple risk for heart disease and lung cancer. Other areas where risks are increased include hepatitis, ischemic heart disease, depression, and suicide. The impact of childhood trauma is not confined to an individual’s health prospects, however, and also spills over into other areas.

In her TED talk, Dr. Nadine Burke Harris breaks down how the stresses associated with abuse, neglect, and parental difficulties—which can range from mental health or substance abuse struggles to separation or domestic violence—affect a child in the short and long term. Yet, she points out that in spite of these high stakes, doctors are not yet trained in routing screening or treatment of this ailment. She then recounts her personal journey to discovering the impact of childhood trauma and explains how she implements this knowledge to screen and address the ramifications of ACEs. Ultimately, Dr. Burke advocates for increased awareness regarding this threat, as well as a proactive approach to addressing it in order to minimize its potential detrimental effects.

However, we cannot leave it to the medical field to address and work towards eradicating the ill effects of childhood trauma. Rather, it will take a concerted effort from all actors that are able to help secure safe environments and provide appropriate interventions when necessary. For this reason, the Center for Children, Law & Policy’s Zealous Advocacy Conference later this summer will be focusing on adverse childhood experiences. Please be on the lookout over the next few weeks for more information regarding specific conference details.

 

ACEs

Image from http://news.rutgers.edu/news/study-links-early-childhood-trauma-kindergarten-behavior-problems-poor-performance/20160118#.VxOvMGMoFSU.