G364(P) Including parents in a conference call helps communciation and can prevent unnecessary and undesirable transfers

Aims To share our use of four-way communication between paediatric intensive care (PIC), tertiary neurology, parents and a district general hospital in an unusual situation. Method A male baby was born at 37 weeks weighing 2410 and had symmetrical IUGR. Initial tests did not reveal a cause. The baby was admitted to hospital twice because of poor feeding and poor weight gain. Aged 2 months he had marked hypotonia and was admitted for the second time. Echocardiogram showed left ventricular hypertrophy, serum lactate was elevated at 4.5 mmol/L (n 7.7 mmol/L, serum lactate had increased to 8.4 mmol/L. Leigh’s syndrome was strongly suspected but not definite. This is an inherited, usually mitochondrial, untreatable and terminal disorder. Due to impending respiratory failure a transfer to PICU was requested. A conference call initially involving the Consultant Paediatrician, Paediatric Neurologist and Paediatric Intensivist concluded that initiation of intensive care would inevitably lead to palliation in this case. We then invited parents to join the conference call who were able to ask the specialist questions directly and finally agree that intensive care was not in the best interests of their child. Results The baby was palliated in the DGH and died 24 hours later. 15 months later genetic tests confirmed novel heterozygous recessive mutations in a complex 1 gene as the cause of the Leigh syndrome. Conclusions We believe that use of technology to ensure clear communication in a complex situation was vital in achieving the appropriate outcome for our patient. This approach could easily be adopted wherever call conferencing is available.