When her 4-year-old son Alex was wracked by mysterious pain and strange symptoms, Courtney spent three agonizing years visiting doctor after doctor with no answers.
It took an unconventional source – an AI chatbot – to finally unravel the medical mystery.
ChatGPT, the artificial intelligence program, helped this determined mother identify her son’s rare condition after 17 doctors were stumped. The result was not only a correct diagnosis and treatment for Alex, but also a wave of relief for a family that refused to give up.
A mysterious illness and a mother’s desperation
In early 2020, when Courtney first noticed her four-year-old son, Alex, developing odd symptoms, she never imagined it would take three years and 17 doctors to find a solution.
Alex had been a happy preschooler, but he began experiencing relentless pain and strange behaviors.
According to Business Insider, he even started gnawing on objects, possibly attempting to relieve discomfort. Then came halted growth spurts and unexplained tantrums, leaving the family baffled.
Multiple specialists tried to help but proposed conflicting theories. One dentist thought Alex’s chewing might be dental-related, while a pediatrician suspected stress from the pandemic era. Several doctors recommended physical therapy for his uneven gait, but still, no definitive cause emerged. Courtney recounted to Insider the frustration of “every symptom being brushed aside,” as if each doctor could only see a piece of the puzzle.
By 2023, with Alex’s condition worsening, Courtney felt desperate. He was complaining of severe headaches and had trouble walking, favoring one leg like he couldn’t fully control the other.
“I kept telling them: ‘He’s in pain every day. Something’s not right,’” she later recalled. Yet each visit ended the same. No one connected the dots.
That’s when Courtney decided to consult ChatGPT, a move she now credits for saving her son. What began as an unconventional experiment soon delivered the crucial clue 17 human professionals had missed.
A baffling quest for answers that spanned multiple specialties
Courtney’s quest to find answers was grueling.
After seeing multiple pediatricians, she moved on to orthopedic and ENT specialists, then explored neurology. Each discipline ran tests and imaging but never reached a unifying diagnosis.
One orthopedist noticed Alex’s foot alignment was off, leading to the conclusion that specialized insoles or therapy might help. Another specialist attributed his stunted growth to “temporary stress” from pandemic disruptions. Meanwhile, a neurologist labeled his headaches as possible migraines or tension headaches.
With each new guess, Courtney saw partial improvement or no improvement at all.
The family’s frustration only grew.
Seventeen separate doctors offered at least as many different theories, none of which fully explained Alex’s unusual combination of halted growth, chewing discomfort, severe headaches, and a lopsided gait.
According to People magazine, Courtney felt that nobody was willing to solve the greater problem. Instead, they zeroed in on their domain” without investigating beyond their own niche.
Adding to the confusion were normal lab results in some areas. Without glaring red flags, doctors were less inclined to pursue obscure diagnoses.
Courtney recalls hearing phrases like, “Kids are resilient” or “He’ll outgrow this.” But Alex’s condition only worsened, and her maternal intuition kept telling her something more severe was at play.
In late 2022, a test recommended by a pediatric neurologist included an MRI. The images revealed small spinal irregularities but offered no official name for the problem.
That was the final straw:
Courtney felt certain a serious spinal or neurological issue lurked behind the scenes, yet not a single doctor provided a conclusive label.
Turning to ChatGPT for Answers
Frustrated and running out of leads, Courtney turned to ChatGPT, an AI chatbot known for its text-based answers on almost any topic. Many would question using an AI tool for a medical mystery, but for Courtney, it was an act of last resort.
She carefully input Alex’s entire medical history, describing his halted growth, the strange chewing habit, and the MRI’s vague notes on spinal anomalies.
She included every subtle clue that doctors had dismissed.
“I listed out: ‘He can’t sit crisscross applesauce, favors one leg, complains of headaches, and we have an MRI showing something in his lower spine… what could this be?’”
Remarkably, ChatGPT came back with a possible diagnosis: tethered cord syndrome.
This rare condition occurs when spinal tissue is abnormally attached so that the spinal cord can’t move freely.
It often manifests in ways that typical screening can overlook, including subtle gait problems, chronic pain, and stunted growth. Reading ChatGPT’s explanation, Courtney felt a jolt of recognition.
Everything lined up with her son’s experience.
Still, she knew an AI suggestion wasn’t a medical verdict.
But the mention of tethered cord gave her a tangible lead: she could investigate this syndrome more thoroughly and push for an assessment by a neurosurgeon who specialized in spinal anomalies.
Buoyed by hope, she joined an online community for tethered cord syndrome and discovered families whose stories matched Alex’s almost precisely.
A rare diagnosis confirmed
Emboldened by ChatGPT’s clue, Courtney made an appointment with a new neurosurgeon — someone open to exploring “less obvious” spinal pathologies.
She arrived armed with the AI’s suggested diagnosis, the MRI images, and reams of symptom notes.
This time, the specialist immediately saw what all the others had missed: Alex’s spinal cord was tethered by underlying spina bifida occulta, a mild form of spina bifida often hidden on scans.
The neurosurgeon confirmed that the MRI indeed pointed to tethered cord syndrome. No previous doctor had connected the small spinal irregularities to Alex’s wide-ranging symptoms.
For Courtney, the diagnosis was overwhelming relief. She recalls feeling validated—her persistent advocacy had been justified. The neurosurgeon recommended surgery to “release” the tether, allowing Alex’s spinal cord to move normally. Within months, Alex underwent the procedure.
Post-surgery, he is steadily regaining function, and the family is cautiously optimistic about his long-term recovery.
Courtney acknowledges that ChatGPT didn’t fix her son—actual treatment required skilled neurosurgery. But the AI’s insight got them on the right path after years of dead ends.
She credits that moment as “the day everything changed for our family.”
The promise and limits of AI in healthcare
Medical experts have praised the story as an example of AI’s potential to aid in difficult diagnoses or serve as a second opinion in puzzling cases. It underscores how AI might help connect the dots in our complex healthcare system, identifying patterns that a busy human provider might overlook.
At the same time, doctors and ethicists urge caution before declaring AI a healthcare panacea.
ChatGPT is not a doctor, and not every outcome will be like Alex’s.
Jesse M. Ehrenfeld, MD, president of the American Medical Association, noted that while AI tools “show tremendous promise” in medicine, today’s generative AI models “have known issues and are not error free”.
In fact, AI chatbots can sometimes produce incorrect or entirely fabricated information, a phenomenon experts call an “AI hallucination.”
In a medical context, such errors could be harmful if not caught.
A recent research paper on ChatGPT’s applications in medicine pointed out both potential benefits (like aiding in diagnosis or research) and significant ethical and legal concerns that still need to be addressed
In Alex’s case, ChatGPT didn’t replace the doctors – it helped guide the family to the right specialist who then provided proper treatment.
This complementary role for AI is where many see the most realistic value. “AI won’t replace physicians, but physicians who use AI may eventually replace those who don’t,” as the saying goes.
The technology can serve as a tireless aggregator of information and a source of possible clues, especially for rare diseases that a general practitioner might only see once in a lifetime.
Courtney’s story is a perfect example:
When the usual channels failed, AI became another tool in a mother’s toolkit to fight for her child’s health.
As AI becomes more commonplace in medicine, stories like this one spark both hope and thoughtful debate about how to best integrate technology with the timeless art of healing.
