Mental health in OA/TOF

Most adults born with OA/TOF go on to live normal, healthy lives. Many also feel grateful for having survived their difficult beginning and describe resilience that carries on throughout their lives. However, for some adults born with OA/TOF, physical health problems and complications related to OA/TOF can be ongoing and impact the quality of life and psychological wellbeing. Some adults born with OA/TOF report increased levels of anxiety and depression, whilst some have also described trauma responses to medical interventions and hospital admissions. There is very limited research on the mental health of adults born with OA/TOF but below are some examples of preliminary findings. (126)

Experience of adults born with OA/TOF

• Many adults born with OA/TOF report a lack of understanding and support from medical professionals. This can lead to some people feeling isolated, dismissed and angry when dealing with healthcare providers. (94) They may also feel frustrated, trying to navigate a complex medical illness whilst locating professionals with knowledge and experience of their anomalies to treat their symptoms effectively.
• The appearance of surgical scars from OA/TOF operations vary greatly. All adults born with OA/TOF have at least one surgical scar. More complex patients may have multiple scars, some of which can be cosmetically unsightly. Whilst some adults regard these scars in a positive light, and a sign of their achievement in surviving, the scars might impact others negatively, particularly in social and public situations.
• Most adults born with OA/TOF have experienced coughing and clearing their oesophagus in public. The loud and unusual nature of the ‘TOF cough’ and choking episodes can sometimes elicit public comments and stares. This can, understandably, increase anxiety and avoidance of eating in front of others.

The mental health of those affected by OA/TOF can be impacted in a number of ways. Early childhood (0–5 years) is a vital time for neurological development, formation of attachment, cognitive development and emotional regulation. Adverse experiences during this time may affect brain development, pain sensitivity and attachment. (127,128) To date there is limited research on the mental health consequences of OA/TOF in childhood but the following are examples of preliminary research findings in this area.

Children born with OA/TOF 40 to 50 years ago were likely to have been hospitalised for long periods of time and as such separated from their families. Advances in neonatal surgery and anaesthesiology, an increased knowledge and understanding of attachment issues and the promotion of family-centred care have gone some way to reducing the emotional impact of hospitalisation on the TOF child and their families. (129) Despite the promotion of evidence-based holistic care, many invasive procedures experienced by the sick child are associated with pain and anxiety. These interventions and experiences can have an impact on both the child and families’ wellbeing and mental health attachment. (132)

Dysphagia, GORD symptoms, Nissen fundoplication and higher number of days on ventilator might increase the risk of developing traumatic stress. (134)

Multiple hospital admissions and uncomfortable medical procedures in childhood might increase a child’s anxiety towards medical procedures and professionals. This apprehension and in some cases fear can continue into adulthood

Parents who care for a child with a chronic health condition, compared to parents of a well child, are more likely to report increased levels of anxiety and depression.

Parents may experience trauma responses such as increased anxiety, hypervigilance and avoidance about their child’s health. (94) Fear that their child may die can continue for many years. PTSD may present in both the TOF child and their parents.

Treatment

GPs should, if appropriate, make a referral to suitable mental health services. Or, recommend that patients make a self-referral to NHS talking therapies if OA/TOF-related anxiety, depression or trauma symptoms are impacting on the individual’s quality of life, or ability to cope with day-to-day life.

Mental health difficulties in adulthood

Even though research into mental health difficulties in adults born with OA/TOF is limited, it is known that living with childhood chronic illness has an impact on mental health and quality of life of family members. It is likely that several factors influence the impact, including severity of health condition, (31) pain, presence of associated complications, such as dysphagia and GORD symptoms (and its surgical treatment), and invasive hospital treatments, such as number of days on ventilator. (134)

• Pain during hospital admission is associated with subsequent chronic stress in children, and may trigger PTSD in some cases. (151)
• Multiple hospital admissions in childhood and multiple procedures leave some with a fear of hospitals and medical professionals.
• Lack of awareness of OA/TOF in healthcare professionals in childhood can deter individuals from seeking medical treatment as adults. (213)