For Some Families of Color, a Painful Fight for a Cystic Fibrosis Diagnosis
By Liz Szabo,
The New York Times
| 05. 29. 2024
By the time Rena Barrow-Wells gave birth to her fourth baby in 2020, she was well-versed in caring for a child with cystic fibrosis. She was also experienced in fighting for a diagnosis of the disease, which runs in families and can severely damage the lungs and digestive system.
Nineteen years earlier, her first son, Jarrod, displayed classic symptoms of cystic fibrosis as a newborn — failure to gain weight; a stubborn, phlegmy cough; and frequent, oily stools. But instead of identifying the cause of her son’s illness, doctors at the New Orleans emergency room where she took Jarrod blamed his poor growth on his mother, who is Black and was a teenager at the time. Ms. Barrow-Wells said that doctors had accused her of starving her son, placed the two of them in a room with video surveillance and reported her to child protective services.
Doctors discharged Jarrod two weeks later without a diagnosis. It would take four years — and dozens of additional visits to doctors and emergency rooms — for Jarrod to be diagnosed with cystic fibrosis...
Related Articles
By Staff, The Economist | 02.21.2025
One of the greatest scandals in modern science began with a late-2010s advertisement for HIV-positive couples looking to have children through in-vitro fertilisation (IVF). The ad had been put out by a scientist named He Jiankui, a biologist then at...
By Ben Johnson, Nature | 02.14.2025
A London-based biotech has amassed the world’s largest ethically sourced foundational biodiversity database for training artificial intelligence (AI) by setting up partnerships with 25 countries around the world. The startup, Basecamp Research, announced in January the launch of a new...
By Staff, GMWatch | 02.24.2025
In an open statement, civil society groups, scientists, and academics are challenging the democratic legitimacy of any conclusions or policy proposals that may arise from the 2025 Spirit of Asilomar and the Future of Biotechnology conference currently running from 23-26...
By Tina Stevens and Stuart A. Newman, A Bigger Conversation | 02.06.2025