This is the third year that Jacob Works has made the trip down to Boston Children’s Hospital from Maine. With research assistant Haley Medeiros, he looks at pictures, answers questions, manipulates blocks and mimes actions like knocking on a door. His father, Travis, and another research assistant look on through a window.
“At first, we had to practically bribe him with an iPad with every task,” Travis says. “This year he’s more excited, because he understands more and is more confident and able to share more.”
Jacob, 11, was diagnosed in 2011 with Phelan-McDermid Syndrome, a rare genetic condition that typically causes children to be born “floppy,” with low muscle tone, and to have little or no speech, developmental delay and, often, autism-like behaviors. At the time, Jacob was one of about 800 known cases. But through chromosomal microarray testing, introduced in just the past decade for children with autism symptoms, more cases are being picked up. …
Children with high-risk, complex conditions — such as those who need ventilators to breathe — often receive disjointed care, scattered among many providers. This leads to emergency room visits and hospitalizations that could have been avoided. And once in the hospital, many children remain longer than they should for lack of good home care.
At home, families face daunting challenges. They must learn to use and maintain their children’s medical equipment and handle emergencies. They often have little or no access to home nursing services. Private insurance rarely covers home nursing for more than a limited number of hours, and Medicaid pays too little to attract qualified nurses. Many parents end up quitting their jobs to provide care. …
After hosting a Voice in Healthcare hackathon in various simulated clinical environments in 2016, IDHA ran three pilots with voice-based systems. In the intensive care unit, clinicians used voice as a hands-free way to get basic information, saving time while maintaining infection control standards. The pediatric transplant team used voice prompts to guide them through the pre-operative organ-validation and checklist process.
The third, longest-running pilot is in patients’ homes: Through KidsMD, parents have logged more than 100,000 interactions with Amazon’s voice assistant, Alexa, receiving personalized guidance around common illnesses like ear infections, fever and the common cold. More types of wellness and disease-specific “skills” are in the works to create true home health hubs.
Voice has its limitations, but in a Boston Children’s survey, only 16% of physicians stated they would not try voice.
Traditionally, doctors share the findings of invasive tests using printouts that are highly text-based and filled with medical jargon. Some may have static thumbnail illustrations, but all in all they’re not especially patient friendly.
Michael Docktor, MD, a pediatric gastroenterologist at Boston Children’s Hospital, believed that if kids could really “see” inside themselves, they would have a better understanding of their disease and be more engaged in their treatment.
He connected with Klick Health, a health marketing and commercialization agency that develops digital solutions. Together, they created an entertaining “virtual reality” educational experience. It allows the physician to easily recreate a patient’s actual endoscopic procedure, and, like the Magic School Bus, enables kids to virtually tour their own bodies.
Boston Children’s and Klick Health officially unveiled the iPhone-friendly VR tool, called HealthVoyagerTM, in New York today. …
Retinoblastoma is a rare cancer that originates in the retina, the tissue in the back of the eye that converts light into visual information that is interpreted by the brain.
One retinoblastoma symptom in particular is finding itself in the spotlight. With a rise in social media use in recent years, retinoblastoma has attracted media attention for being a type of cancer that can sometimes be detected through photographs. Across the internet, news stories like this one abound in which friends or relatives have alerted parents to the potential risk of eye cancer after noticing that a child’s pupil appears white instead of red — a symptom called leukocoria — on photos posted to social media.
Fortunately, with proper diagnosis and treatment, 95 percent of children diagnosed with retinoblastoma can be cured. What’s more, a catheter-based treatment approach is now sparing patients from some of the side effects that can be expected from more traditional therapies. …
Everything from food aspiration to an asthma attack to heart failure can cause a patient to die from asphyxia, or lack of oxygen. For more than a decade, the Translational Research Laboratory (TRL) of Boston Children’s Hospital’s Heart Center has been pursuing a dream: tiny, oxygen-filled bubbles that can be safely injected directly into the blood, resuscitating patients who can’t breathe.
The lab’s first generation of bubbles were made with a fatty acid, but the lipid shells weren’t stable enough for long-term storage or clinical use. The bubbles popped open too easily. …
Medical devices for children tend to have small markets, so development can lag up to a decade behind similar devices for adults. The Boston Pediatric Device Consortium (BPDC), formed through an FDA initiative, aims to change that math.
This month, the BPDC and the Innovation and Digital Health Accelerator at Boston Children’s Hospital announced five winners of a national pediatric device challenge. Each winner will receive a combination of up to $50,000 in funding per grant award and/or in-kind support from leading medical device strategic partners, including Boston Scientific, CryoLife, Edwards Lifesciences, Health Advances, Johnson & Johnson Innovation, Medtronic, Smithwise, Ximedica and the Boston Children’s Simulator Program. These organizations will provide mentorship, product manufacturing and design services, simulation testing, business plan development, partnering opportunities and more.
“We have a major unmet need for pediatric medical devices that are specifically designed to address the demands of a growing, active child,” said BPDC leader Pedro del Nido, MD, chief of Cardiac Surgery at Boston Children’s, in a press release. “We are pleased to support these teams as they work toward accelerating their technologies from concept to market.”
Surgeons at Boston Children’s Hospital have long sought a better solution for long-gap esophageal atresia, a rare birth defect in which part of the esophagus is missing. The current state-of-the art operation, called the Foker process, uses sutures anchored to children’s backs to gradually pull the unjoined ends of esophagus until they’re long enough to be stitched together. To keep the esophagus from tearing, children must be paralyzed in a medically induced coma, on mechanical ventilation, for one to four weeks. The lengthy ICU care means high costs, and the long period of immobilization can cause complications like bone fractures and blood clots.
Now, a Boston Children’s Hospital team has created an implantable robot that could lengthen the esophagus — and potentially other tubular organs like the intestine — while the child remains awake and mobile. As described today in Science Robotics, the device is attached only to the tissue being lengthened, so wouldn’t impede a child’s movement. …