Advances in neonatal surgery, intensive care, and paediatric medicine have transformed outcomes for children born with complex congenital conditions, including Oesophageal Atresia/Tracheoesophageal Fistula (OA/TOF), Anorectal Malformations (ARM) which sit under the umbrella of the VACTERL Association. However, survival is only the beginning. Childhood surgery does not erase altered anatomy, scar tissue, or lifelong physiological adaptations. As more children with complex congenital conditions reach adulthood, healthcare systems must evolve to meet their lifelong needs. On World Patient Safety Day, safety must encompass more than clinical outcomes: it must mean lifelong health, dignity and independence.
From a patient perspective, safety extends beyond preventing harm within clinical settings. It is also the sense of security that comes from receiving excellent, compassionate and consistent care; from being listened to, understood and believed; and from knowing that healthcare professionals recognise the challenges that can arise in everyday life and respond to them with understanding and expertise.
Multi-System Challenges in Adulthood
Adults living with OA/TOF and ARM can experience interconnected complications across multiple systems. Without proactive, multidisciplinary oversight, these may be missed or treated in isolation, increasing the risk of delayed diagnosis, fragmented care and avoidable harm:
Respiratory and airway: tracheomalacia, silent aspiration, recurrent chest and sinus infections, bronchiectasis, and reduced lung capacity.
Gastrointestinal and nutritional: dysphagia, impaired oesophageal motility, GORD, Barrett’s oesophagus, gastroparesis, dumping syndrome and recurrent strictures, contributing to dietary restriction, food aversion, and choking anxiety.
Urological, renal and reproductive: renal and urinary tract anomalies, lifelong bladder and bowel dysfunction, incontinence, subfertility, and genital tract anomalies.
Musculoskeletal and neurological: tethered cord syndrome, scoliosis and chest-wall deformities, with potential chronic pain, neurological symptoms, and restricted mobility.
These challenges interact across physical, psychological and social domains, making coordinated lifelong care essential to patient safety.
The ‘Transition Cliff’
The move from holistic, family-centred paediatric care to fragmented adult services can create a ‘transition cliff’. Gaps in specialist follow-up and unclear responsibility for coordination may leave young people without an overview of their needs, increasing the risk of missed diagnoses, loss of continuity, and disengagement.
Young adults may be expected to:
Manage lifelong medical records and chase referrals.
Repeatedly explain childhood operations and complex anatomy.
Reconcile conflicting advice from disconnected specialists.
Identify the right specialist while experiencing treatment fatigue or medical burnout.
Safety should not depend on patients becoming their own case managers.
Psychological, Psychosexual & Social Impact
The impact of complex congenital conditions extends beyond physical health. Lifelong symptoms, repeated procedures, and altered anatomy can affect confidence, relationships, mental health, and participation in everyday life.
Medical trauma, anxiety and healthcare avoidance: repeated surgery and invasive procedures can contribute to medical trauma, clinical anxiety, and healthcare avoidance.
Body image and relationships: scars, stomas, feeding tubes, and anatomical differences can contribute to body-image distress, self-stigma, challenges with relationships, and psychosexual wellbeing.
Social & functional disruption: bowel and bladder dysfunction, choking risks, and chronic fatigue can disrupt education, employment, financial independence, and everyday social participation.
These are not secondary concerns. Psychological and social wellbeing are integral to safe, effective lifelong care.
Essential Pillars of a Connected Ecosystem
Safe care for life requires a shift from reacting to complications towards prevention, anticipation, and proactive lifelong surveillance. Coordination must be a responsibility of the healthcare system, not the patient.
Structured transition programmes: planned pathways linking paediatric and adult care, with effective handover and clear responsibility for ongoing care.
Adult congenital multidisciplinary clinics: coordinated access to specialists who understand complex congenital conditions and their lifelong consequences.
Embedded psychosocial support: routine access to psychological, pain, relationship, and psychosexual wellbeing.
Integrated records and surveillance: accessible lifelong records and proactive surveillance plans to reduce information loss and identify risks early.
Patient empowerment & meaningful involvement: supporting self-management and shared decision-making, while involving people with lived experience in care planning, service design, and quality improvement through patient-reported outcome measures (PROMs).
Turning Survival into Lifelong Health
World Patient Safety Day 2026, under the slogan “Safe care for life!”, highlights the need for coordinated care across the entire journey.
For people with rare congenital conditions, fragmented services, multiple specialists, and repeated transitions create significant patient-safety risks, including delayed diagnosis, communication failures, and gaps in follow-up. These risks increase when patients and families must navigate complex systems without coordinated support.
For the rare congenital disease community, this means moving beyond survival towards lifelong health. A coordinated Action Plan for Rare Diseases must address structural gaps through effective transition pathways, multidisciplinary specialist networks, proactive surveillance, and integrated psychological support.
Patients should not have to carry their entire medical history, repeatedly educate new clinicians, or fight to access appropriate expertise simply because their condition is rare.
Children with complex congenital conditions, who once faced limited prospects of survival, are now growing into adulthood. The next patient-safety challenge is ensuring they survive well.
Survival was the achievement of yesterday.
Lifelong health must be the ambition of tomorrow.
Katrina Tyler
Lay Person / Patient representative
RCSEd role: Member of RCSEd Patient Safety Committee
