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.