Mother Battles for Baby’s Care After Misdiagnosis of Serious Condition

A mother is advocating for her infant daughter’s health after experiencing a severe misdiagnosis that delayed critical treatment for five months. Morgan Austin, a 27-year-old resident of Teynham, has recounted the distressing journey of seeking help for her newborn, Matilda, who was born four weeks prematurely on January 13, 2023, at Medway Maritime Hospital.

Initially, Matilda appeared to be a healthy baby, but her condition took a concerning turn shortly after birth. She developed jaundice, which is typically a benign condition characterized by yellowing of the skin. While this symptom resolved within a week, Matilda began to exhibit troubling signs, including difficulty feeding, persistent arched back movements described as a “banana pose,” and episodes of continuous crying.

Despite Morgan’s numerous visits to general practitioners and specialists at Medway and William Harvey Hospital in Ashford, her daughter’s symptoms were attributed to “severe reflux.” Morgan stated that she was prescribed medication that failed to alleviate Matilda’s distress.

In a desperate attempt to find answers, Morgan returned to the A&E ward at William Harvey Hospital on May 1, where she insisted on a thorough examination. “I tried lots of different medications and nothing seemed to work,” she shared. “Each time I was told that I’m a first-time mum and this is normal. But I knew it wasn’t.”

It was during this visit that a doctor performed a physical examination, leading to a shocking discovery. The physician noted that Matilda’s reflexes were underdeveloped and her stiffness was abnormal. Though some symptoms aligned with reflux, the doctor suggested a potential neurological issue. An MRI scan revealed Matilda had suffered a brain bleed, prompting immediate transfer to Evelina Children’s Hospital in London for further evaluation.

Over the next two weeks, specialists conducted additional tests, including another MRI and an ultrasound. They confirmed the presence of a bleed but could not determine when it occurred. The findings ultimately led to a diagnosis of dystonia, a condition resulting in painful and uncontrolled muscle movements, along with white matter damage. In July, Matilda was diagnosed with cerebral palsy. Morgan expressed her shock at the diagnosis, acknowledging the challenges that lie ahead for her daughter in terms of motor skills development.

“Being a parent is hard as it is, but then having a child with a disability and really complex needs is really, really difficult,” Morgan remarked. Although Matilda is receiving care through the National Health Service (NHS), Morgan feels the support is insufficient. Matilda’s last doctor’s appointment was in June, with her next scheduled for September.

Morgan emphasized the importance of early intervention, stating, “I was told that physiotherapy is key, especially the first two years of life.” She noted the limitations of the NHS in providing timely and adequate therapy for Matilda’s needs. To supplement this care, Morgan has sought private physiotherapy, which costs approximately £120 per hour. The financial burden is significant, particularly as she is still on maternity leave.

In response to these challenges, Morgan and her family have initiated a fundraising campaign to help cover the costs of Matilda’s therapies. “The amount of support I’ve received so far has just been outstanding,” she said. They have also organized a fundraising event set to take place on October 11, 2023, at Sittingbourne Golf Club, featuring live music, a raffle, and a Boogie Tots dance class.

Morgan’s experience underscores the importance of vigilant advocacy in the healthcare system, especially for parents navigating complex medical situations. She hopes that by sharing her story, she can raise awareness and support for families facing similar struggles.

The NHS trusts overseeing Medway and Ashford hospitals were approached for comment regarding the case.