Reflections from Adults Living with VACTERL Association
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Understanding Ourselves
For a long time we lived behind a mask, a barrier we believed was necessary just to navigate the world. It wasn’t something we questioned; it was simply how we survived.
Then we met others like ourselves. In their presence, the mask didn’t shatter dramatically, it purely slipped away, quietly and naturally. In that moment came a powerful realisation: accepting oneself is not a weakness, but the foundation of everything.
From that acceptance came strength. Not the loud, visible kind often celebrated, but something deeper and more enduring.
The kind of strength that grows when surrounded by people who truly understand, who share the same challenges, the same questions, and the same quiet, unseen battles.
In those spaces, there is no need to explain or to hide.
Emotional Impact
and Identity
Being “fixed” is not the same as being whole. We are born into bodies that do not always meet societal expectations. From the very beginning, the focus is often on correction, procedures, interventions, decisions made quickly, and sometimes without fully understanding what it means to live in these bodies over a lifetime. Too often, success is measured by how closely someone appears to fit a perceived norm, rather than by how well they feel, function, and live.
The consequences of that approach are not always immediate. They can emerge later, in physical complications, in unanswered questions, and in a quiet but persistent feeling that something was done to us, rather than with us.
Healthcare systems, clinicians, and patient organisations must work together to ensure individuals are informed, involved, and respected at every stage. People should be supported to understand their own bodies and choices, to speak, to question, and to decide. Because the goal should never be to make someone fit the world at any cost.The goal should be to help them live in it, whole, informed, and unbroken.
Growing up with a rare condition often involves repeated hospital admissions, surgeries, investigations, and ongoing symptom management. These experiences can be physically and emotionally demanding and may affect confidence, relationships, education, employment, and independence.
Some children and adults may experience:
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Anxiety or depression
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Medical trauma related to repeated procedures or hospitalisation
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Anxiety or embarrassment related to bladder or bowel control
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Fear of choking or eating-related anxiety
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Food avoidance or social withdrawal
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Chronic pain and fatigue
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Body image concerns and low self-esteem
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Difficulties with relationships or social integration
Adolescence and school years can be particularly sensitive, as individuals may become more aware of differences from peers, including visible scars, medical devices, or absences from school. Transition periods such as moving to adult healthcare services, university, employment, relationships, or parenthood may add further emotional pressure.
Importance of Community
Patient organisations play a vital role in connecting people, but connection alone is not enough. They must go further, towards empowerment.Individuals should be supported to become experts in their own conditions: to understand their bodies, their histories, their options, and their rights. This means building confidence. It means creating space for people to ask questions, to challenge decisions, and to speak up without fear. It means equipping individuals not just to receive care, but to actively shape it.
Through organisations and shared spaces, people find something that may once have felt out of reach: belonging. Friendships replace isolation. Understanding replaces doubt.
Peer support and connection with others who have similar experiences can help reduce isolation and improve confidence. For many people living with VACTERL Association, meeting others with shared experiences can be life-changing. Because in the end, no one should have to face it alone.
Adult Healthcare and Long-Term Support
Living with VACTERL Association can affect many areas of life beyond physical health. Although many congenital anomalies are treated in childhood, the long-term effects of these conditions, repeated surgeries, and ongoing medical care may continue into adulthood. Experiences vary widely,some individuals live independently with minimal ongoing difficulties, while others manage complex and lifelong medical, physical, and psychological needs.
Body Image, Self-Confidence, and Social Experiences
Body image concerns and social anxiety are common, particularly for those with visible scars, spinal or chest differences, stomas, feeding tubes, or long-term feeding difficulties. Repeated childhood medical procedures may influence body image and self-confidence.
Some individuals report:
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Feeling self-conscious about physical differences
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Avoiding certain clothing or activities
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Anxiety around intimacy or sexual relationships
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Reduced confidence in social situations
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Difficulty discussing their condition
For those with conditions such as oesophageal atresia, tracheo-oesophageal fistula, anorectal malformations, or feeding difficulties, eating may become associated with stress or fear.
This can include:
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Anxiety around swallowing or choking
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Avoidance of certain foods or textures
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Eating differently from others
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Discomfort eating in public
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Social withdrawal from meals or eating-related activities
Chronic Pain, Fatigue, and Daily Functioning
Chronic pain and fatigue are increasingly recognised as long-term issues in some adults. Pain may result from previous surgeries, musculoskeletal abnormalities, spinal conditions, nerve damage, scar tissue, or gastrointestinal complications such as adhesions.
These symptoms can affect:
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Sleep
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Mobility
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Physical activity
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Concentration and memory
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Mental health
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Education and employment
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Independence
Many individuals also describe exhaustion from managing ongoing healthcare needs alongside everyday life.
Education, Employment, and Independence
Medical conditions associated with VACTERL Association may influence educational experiences and career opportunities. Challenges can include:
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Absences due to illness or appointments
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Fatigue affecting concentration
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Difficulty participating in physical activities
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Anxiety about symptoms in public settings
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Challenges accessing workplace adjustments
Some individuals may need support with independent living, benefits, or healthcare navigation. Despite this, many people go on to achieve education, employment, relationships, and family life successfully.
Relationships and Social Life
Living with a complex congenital condition can affect friendships, romantic relationships, and family dynamics. Some individuals report:
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Difficulty explaining their condition
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Fear of rejection or misunderstanding
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Anxiety around intimacy or fertility concerns
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Feelings of isolation
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Increased reliance on family or caregivers
Surgical History and Long-Term Complications
Many adults have undergone multiple childhood surgeries. While often essential, these may be associated with long-term complications, including:
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Adhesions causing bowel obstruction
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Hernias
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Chronic scar or musculoskeletal pain
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Reduced mobility or stiffness
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Complications related to stomas or feeding tubes
Some issues may not appear until adulthood and can require further surgical or specialist management.
Transition
Transition from paediatric to adult services can be challenging. Adults may experience:
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Fragmented care
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Limited specialist knowledge
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Repeated medical histories with new providers
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A lack of long-term research or clear adult care pathways
Emerging evidence suggests some adults may experience earlier onset of chronic pain, increased healthcare needs compared with peers, and late complications from childhood surgeries. Coordinated multidisciplinary care and regular follow-up are important for identifying complications early and supporting long-term physical and emotional wellbeing.
Psychosocial Support
Psychological and social support can play an important role in long-term wellbeing. Helpful approaches may include:
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Counselling or psychotherapy
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Trauma-informed care
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Peer support groups
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Social work input
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Occupational therapy
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Educational and employment support
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Coordinated multidisciplinary care
Effective long-term care should address both physical health and emotional wellbeing, supporting independence, relationships, education, employment, and overall quality of life.
Strive to Thrive
Adults born with congenital differences often grow up feeling outside what is considered “normal.” In response, many develop a powerful internal drive. Psychology sometimes describes this as compensation, focusing energy on areas where one can feel capable and in control.
For some, this evolves into overcompensation: not just striving to succeed, but to exceed expectations and prove worth. What begins as a response to limitation can become a source of remarkable strength.
Early challenges, whether physical, social, or emotional, can foster resilience, adaptability, empathy, and determination. Many go on to reach milestones once thought impossible. They are not defined by their condition, but they are undeniably shaped by how they navigate it, grow through it, and ultimately embrace it.
They face challenges that others may never encounter, yet they adapt, push forward, and continue to strive. Their resilience becomes part of who they are. Within those challenges, there are unexpected rewards:
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A drive to learn and understand
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A willingness to explore new paths
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A deep appreciation for connection and community
What begins as difference can evolve into profound strength, the ability not only to survive, or even to strive, but to truly thrive. Perhaps most importantly, to do so alongside others who understand the journey.
DISCLAIMER:
By using our website you acknowledge that you are accessing information and peer support only and not professional medical healthcare advice.
If you are unsure about any aspect of your health or treatment, please consult a healthcare professional immediately.