KATE’S STORY

I was diagnosed at birth with tracheoesophageal fistula, oesophageal atresia,  anorectal malformation, and thumb duplication. Later, other health issues emerged, affecting my gynaecological, vertebral, and renal systems. These anomalies are recognised as part of the ‘VACTERL’ association.

I underwent lifesaving surgery within hours of birth. Five days later, I was diagnosed with intestinal obstruction, requiring further surgery, including bowel resection and formation of a colostomy.

My childhood was marked by significant bowel difficulties with abdominal cramping and faecal overflow. Severe faecal impactions required manual evacuations, experiences that were physically exhausting and emotionally traumatic.

Although often perceived as childhood conditions, rare and complex congenital disorders can shape an entire lifetime. Physical, psychological, and social challenges frequently go unseen in adult care, leaving many individuals feeling isolated and unsupported. My experience mirrors the isolation felt by many adults, especially when early surgical “success” leads others to assume the condition has been cured, despite ongoing and unmet needs.

ERN eUROGEN has transformed my experience from isolation to connection, empowerment, and advocacy. It has validated my lived experiences and provided opportunities to apply them to guide and influence care, helping make lifelong care safer, more compassionate, and truly patient-centred.