Chorley Mother Champions Change After Son's Hydrocephalus Diagnosis Struggle

In a poignant story of resilience and advocacy, a Chorley mother is making waves for her tireless campaign to improve the diagnosis of hydrocephalus, a condition characterized by an accumulation of cerebrospinal fluid within the brain. Victoria’s journey began with the birth of her son, Seb, who was diagnosed with a cyst on his brain shortly after his arrival. However, it took a grueling ten months before he was accurately diagnosed with hydrocephalus, a delay that has ignited her passion for change. From the start, Victoria sensed that something was amiss with her baby. Despite Seb meeting some developmental milestones—he sat up at six months—he exhibited behaviors that raised alarms for his mother. “He was always toppling over… he was always a very unsettled baby,” she recalled, underscoring the intuition that many parents share when they feel that something is not quite right with their child. Despite advocating for Seb’s health and voicing her concerns to local health professionals, Victoria was repeatedly reassured that everything was normal. However, when Seb began vomiting daily and ceased to crawl at nine months, Victoria's worries intensified, prompting a scan at the Royal Preston Hospital. It was during this visit that the devastating diagnosis of hydrocephalus was revealed, leading to a frantic transfer to the Royal Manchester Children’s Hospital for emergency brain surgery. Victoria’s experience highlights a critical issue in pediatric healthcare: the need for timely and accurate diagnoses. “I had no idea what [hydrocephalus] was. I’d never heard of it,” she stated, reflecting the shock and confusion many parents face when navigating such serious medical conditions. Following a series of four operations and the insertion of a shunt—a small tube used to drain excess fluid—Seb is now a spirited three-and-a-half-year-old, but the journey has left an indelible mark on Victoria. In response to her personal experiences, Victoria has stepped into a leadership role within the national Get-a-Head campaign, which is spearheaded by the Harry's HAT (Hydrocephalus Awareness Trust) charity. The campaign advocates for a proactive approach to monitoring newborns, urging the government to consider implementing a schedule for head measurements during the first year of life. This initiative aims to catch potential issues early on, helping to prevent delays in diagnosis and treatment like those experienced by Seb. A spokesperson for the Department for Health (DfE) has stated that the government employs a "risk-based approach" in accordance with "clinical guidelines." However, Victoria’s campaign underscores the urgent need for more comprehensive screening measures that could save countless families from similar distressing experiences. As Victoria continues her advocacy work, she is not just fighting for her son but for all children who may be suffering in silence due to undiagnosed conditions. Her story serves as a powerful reminder of the vital importance of listening to parents and taking their concerns seriously, ensuring that every child receives the timely care they deserve.