Feature Story

Amber Freed and Maxwell near their home in Denver, Colorado.

Courtesy Amber Freed

Amber Freed felt she was the happiest mother on earth when she gave birth to twins in March 2017. But that euphoric feeling began to fade over the next few months, as she realized her son wasn't making the same developmental milestones as his sister. "I had a perfect benchmark because they were twins, and I saw that Maxwell was floppy—he didn't have muscle tone and couldn't hold his neck up," she recalls. At first doctors placated her with statements that boys sometimes develop slower than girls, but the difference was just too drastic. At 10 month old, Maxwell had never reached to grab a toy. In fact, he had never even used his hands.

Thinking that perhaps Maxwell couldn't see well, Freed took him to an ophthalmologist who was the first to confirm her worst fears. He didn't find Maxwell to have vision problems, but he thought there was something wrong with the boy's brain. He had seen similar cases before and they always turned out to be rare disorders, and always fatal. "Start preparing yourself for your child not to live," he had said.

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Lina Zeldovich
Lina Zeldovich has written about science, medicine and technology for Scientific American, Reader’s Digest, Mosaic Science and other publications. She’s an alumna of Columbia University School of Journalism and the author of the upcoming book, The Other Dark Matter: The Science and Business of Turning Waste into Wealth, from Chicago University Press. You can find her on http://linazeldovich.com/ and @linazeldovich.
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Becky Cummings, who got vaccinated in December, snuggles her newborn, Clark, while he takes a nap.

Photo credit: Rachel Walter

Becky Cummings had multiple reasons to get vaccinated against COVID-19 while tending to her firstborn, Clark, who arrived in September 2020 at 27 weeks.

The 29-year-old intensive care unit nurse in Greensboro, North Carolina, had witnessed the devastation day in and day out as the virus took its toll on the young and old. But when she was offered the vaccine, she hesitated, skeptical of its rapid emergency approval.

Exclusion of pregnant and lactating mothers from clinical trials fueled her concerns. Ultimately, though, she concluded the benefits of vaccination outweighed the risks of contracting the potentially deadly virus.

"Long story short," Cummings says, in December "I got vaccinated to protect myself, my family, my patients, and the general public."

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Susan Kreimer
Susan Kreimer is a New York-based freelance journalist who has followed the landscape of health care since the late 1990s, initially as a staff reporter for major daily newspapers. She writes about breakthrough studies, personal health, and the business of clinical practice. Raised in the Chicago area, she holds a B.A. in Journalism/Mass Communication and French from the University of Iowa and an M.S. from the Columbia University Graduate School of Journalism.

Katherine Leon and her dog enjoy nice weather in their backyard in Virginia. Leon went from feeling like she was "wandering in the woods" with doctors who hadn't experienced her spontaneous coronary artery dissection, or SCAD, to starting the world's largest registry for research on the condition.

Photo by Evan Leon

When Kimberly Richardson of Chicago underwent chemotherapy in 2013 for ovarian cancer, her hip began to hurt. Her doctor assigned six months of physical therapy, but the pain persisted.

She took the mystery to Facebook, where she got 200 comments from cancer survivors all pointing to the same solution: Claritin. Two days after starting the antihistamine, her hip felt fine. Claritin, it turns out, reduces bone marrow swelling, a side effect of a stimulant given after chemo.

Richardson isn't alone in using social media for health. Thirty-six percent of adults with chronic diseases have benefited from health advice on the internet, or know others who have. The trend has likely accelerated during COVID-19. "With increases in anxiety and loneliness, patients find comfort in peer support," said Chris Renfro-Wallace, the chief operating officer of PatientsLikeMe, a popular online community.

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Matt Fuchs

Matt Fuchs is a health and science writer based in Silver Spring, Maryland. He has written on a variety of health topics, including profiles of older athletes defying their ages, for publications such as The Washington Post, The Washington Post Magazine, and Medium's The Startup. He is also a science fiction author. Follow him on Twitter, @fuchswriter.