Living with VACTERL Association
Oesophageal Atresia and Tracheo-Oesophageal Fistula
Adults who were born with oesophageal atresia (OA) and/or tracheo-oesophageal fistula (TOF) may experience lifelong digestive, swallowing, and respiratory complications. These problems can persist even after childhood surgical repair because of abnormal oesophageal motility, airway changes, and reflux.
Oesophageal and Digestive Problems
Common symptoms and complications include:
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Swallowing difficulties (dysphagia)
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Food sticking or regurgitation
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Oesophageal narrowing (strictures), sometimes requiring dilatation procedures
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Poor or absent oesophageal motility, making it difficult for food and liquids to pass normally
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Gastro-oesophageal reflux disease (GORD)
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Oesophageal spasm causing chest or neck pain during swallowing
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Gastroparesis (delayed stomach emptying)
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Eosinophilic oesophagitis
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Barrett’s oesophagus, where changes develop in the lining of the oesophagus due to long-term reflux
Some adults may require further procedures, including fundoplication or revision surgery.
Respiratory and Airway Problems
Because the digestive and respiratory tracts are closely linked, adults with OA/TOF may also experience:
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Persistent “TOF cough”
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Silent aspiration
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Recurrent chest or sinus infections
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Tracheomalacia or bronchomalacia (airway weakness)
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Bronchiectasis
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Vocal cord dysfunction or hoarseness
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Asthma-like symptoms
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Reduced exercise tolerance due to airway compromise
Nutrition and Feeding Difficulties
Long-term feeding and nutritional challenges may include:
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Difficulty maintaining weight or adequate nutrition
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Food texture aversion or restricted diet variety
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Long-term enteral feeding (PEG or jejunal tube feeding)
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In some cases, parenteral nutrition
ENT and Musculoskeletal Issues
Some adults may also experience:
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Chronic rhinitis or sinusitis
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Middle ear infections
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Laryngeal clefts
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Chest wall deformities
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Thoracic nerve or musculoskeletal pain
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Scoliosis related to childhood thoracotomy surgery
Emotional Wellbeing and Quality of Life
Living with ongoing swallowing, breathing, and feeding difficulties can significantly affect quality of life. Some adults report:
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Anxiety around eating or fear of choking
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Food avoidance and social withdrawal
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Psychological distress related to repeated medical procedures
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Body image concerns related to scars or feeding tubes
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Chronic pain and fatigue affecting daily activities
Monitoring and Long-Term Care
Long-term follow-up is important to monitor complications and manage symptoms. Assessment may include:
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Endoscopy
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Oesophageal manometry
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Barium swallow studies
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Monitoring for reflux complications, including Barrett’s oesophagus
Management often involves multidisciplinary care, including gastroenterology, respiratory medicine, ENT, dietetics, speech and language therapy, and psychological support where needed.
"From the beginning, life tested me through feeding difficulties, choking
episodes, and hospital stays. These experiences shaped my resilience,
determination, and gratitude. Despite everything, I feel fortunate to have survived and carry that sense of strength and hope with me every day."
"Learning more about my anomalies later in life has inspired a strong passion to help people access the support they need, whether through signposting organisations, sharing information, or raising awareness of the conditions linked to VACTERL Association."
"I was born with tracheoesophageal fistula, oesophageal atresia and kyphoscoliosis, which has worsened over my lifetime, significantly reducing my lung capacity, this makes breathing difficult."
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If you are unsure about any aspect of your health or treatment, please consult a healthcare professional immediately.