A mother shared a cautionary tale urging parents to listen to their instincts after medical professionals repeatedly misdiagnosed her baby’s serious health issue as a chest infection on multiple occasions. Ellie Stimson, 21, persisted in seeking help for her daughter, Isla-Rae Burton, despite being sent home by doctors from both her GP practice and the hospital over an eight-month period. Eventually, Isla-Rae was rushed to the hospital in an ambulance and diagnosed with a collapsed lung, requiring six hours on life support.
At 11 months old, Isla-Rae now faces major surgery for the collapsed lung and the rare Congenital Pulmonary Airway Malformation (CPAM), a condition characterized by cysts in the lung that develop in the womb. The family was shocked to learn about the severity of the condition, with statistics from Asthma + Lung UK indicating that three out of 100 individuals with untreated CPAM may experience severe complications like lung cancer and heart failure.
Speaking from their home in Newcastle-under-Lyme, Staffordshire, Ellie expressed frustration over the delay in diagnosis, emphasizing the potential life-threatening consequences if the condition had been left untreated. Ellie and her partner, Keiron Burton, noticed Isla-Rae struggling with breathing and exhibiting respiratory issues shortly after her birth in February last year.
Despite their concerns and multiple visits to healthcare professionals, including seven trips to the GP and eight visits to the Royal Stoke University Hospital, the couple was reassured that Isla-Rae would likely outgrow her symptoms. Ellie, who had to give up her job to care for Isla-Rae full-time, felt vindicated when the correct diagnosis was made in October, revealing the rarity of CPAM affecting only one in 10,000 babies.
The family is now awaiting Isla-Rae’s surgery at Birmingham Children’s Hospital, with support from a GoFundMe campaign to cover living expenses during this challenging time. Royal Stoke University Hospital has responded to the family’s concerns and is actively investigating the matter. Isla-Rae’s surgery will be performed at a specialized center, but until then, Ellie, Keiron, and Isla-Rae are focused on her care and well-being.
Ann-Marie Riley, the chief nurse at Royal Stoke University Hospital, assured that they take all concerns seriously and are working diligently to address the family’s complaints. The family continues to seek support as they navigate Isla-Rae’s medical journey.