Tethered Cord Syndrome: A Family’s AI-Assisted Diagnosis and the Path to Healing

Amid a sudden illness, Alex began to suffer mysterious pain. A four-year-old boy, he required daily ibuprofen just to find a moment of relief. Yet the symptoms persisted and even worsened, stopping his growth. A long journey followed, filled with doctors, hospitals, and tests that never gave a clear answer. Over three years, Alex saw 17 specialists who could not diagnose him correctly. What illness did he have? The breakthrough came when his mother, Courtney, turned to an AI assistant. The artificial intelligence chatbot suggested a diagnosis that no doctor had proposed: tethered cord syndrome. Surgery and rehabilitation offered a path to recovery.

The 17 doctors who examined Alex not only learned what happened but often suggested incorrect conditions. This caused immense distress for the family, and it became even harder to cope as the disease kept him from playing with friends and living like other kids. “We saw so many specialists… we even went to the emergency room once. But I kept insisting,” Courtney explains to American media.

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This stubbornness, mixed with frustration, led to opening an account on ChatGPT. He fed Alex’s medical history into the chat — line by line, listing all the symptoms, every test result, and everything that happened to him, she recounts on NBC’s Today show.

“I noted that he couldn’t sit still with his hands folded. That was a strong signal something was seriously wrong,” she recalls. Courtney remembers spending long hours in front of the computer until the AI suggested tethered cord syndrome. It made sense, she says.

Although AI creators warn that technology can risk human safety, the OpenAI chatbot developed in 2022 unexpectedly helped Alex. His mother joined a Facebook group for families facing the same condition. “Hearing their stories felt like hearing my own son,” she says.

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rare neurological condition

She arranged a visit with a brain surgeon after reviewing magnetic resonance images. The surgeon quickly identified what had happened to the boy. “Here’s spina bifida, and this is where the spinal cord is fixed,” Courtney recalls.

In contrast, the other 17 doctors had blamed cavities, Covid, migraines, fatigue, vertigo, sinus problems, airway obstructions, growth and sleep issues. The list of symptoms was long, and some experts even suggested brain abnormalities or other congenital problems.

“No one was willing to address the core problem,” she tells Today magazine. “No one gave us a clue about what this might be.” Still, the final assessment allowed Alex to undergo surgery to relieve tension on the spinal cord.

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About tethered cord syndrome

Tethered spinal cord syndrome is a rare neurological condition that occurs when spinal cord tissue forms abnormal connections. This can stretch nerve tissue and limit movement, according to leading medical associations. The condition is closely related to a form of spina bifida called occulta, a birth defect where parts of the spinal cord do not fully develop and nerves are exposed.

“Diagnosing this in young children can be tough because they cannot express how they feel,” explains a pediatric neurosurgeon from a prominent medical institute in Detroit. The expert adds that many children show a visible opening on the back, though the case here was a latent form of spina bifida that was closed.

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“Protector of your children”

After years of fighting for their child, Courtney speaks with a mix of relief and resolve. “There is relief, validation, and hope for the future,” she says. She also urges other families to advocate for their children, because no one else will connect all the dots for them.