Background Surgery in children with complex disability is ethically and practically difficult. Many disabled children benefit from relatively simple surgical procedures but the risks can deter some surgeons from performing the surgery. Some families do not fully understand the potential long term dependence that may follow.
Patients and methodology A clinic appointment was made with a single consultant (RRR). A detailed history and examination was followed by a discussion of the risks of surgery. Specific risks discussed included an estimate of the risk of post-operative ventilation, and ventilation for longer than one week. Options for that eventuality (ranging from a tracheostomy and full intensive care through to palliative support) were then explained.
Results Twenty one visits in 20 patients have taken place. In five patients a Do Not Resuscitate order was already in place or had previously been discussed. Medical diagnoses were varied. Surgical procedures included gastrostomy formation, PEG change and muscle biopsy. Two children died before surgery and three others decided against the planned surgery in view of the risks. Of the 16 operations that took place, no children required post-operative ventilation. Length of stay varied between 1 day and 5 days (median 1.5 days). Nine patients have subsequently died.
Discussion Preoperative discussions were helpful to both families and staff, and helped clarify expectations. Extubation was often carried out with the parents present and agreement on non-reintubation. We suggest that brief surgical procedures in complex disabled children can be well tolerated and benefits from careful discussion ahead of surgery.