LUKE OWEN JACKSON · Prevention of Future Deaths report

On 20th December 2019 an investigation was commenced into the death of LUKE OWEN JACKSON, 9. The investigation concluded at the end of the inquest on 7th October 2020. The conclusion of the inquest was a narrative and the cause of death
1a Hypoxic Ischaemic Encephalopathy due to prolonged Cardiac Arrest 1b Hypokalaemia 1c Pneumonia II Becker’s Muscular Dystrophy, Epilepsy, Post-Obstructive Hydrocephalus with VP shunt in situ

Luke died on palliative care at the Evelina Children's Hospital on 12th December 2019 of an Hypoxic Ischaemic Encephalopathy due to prolonged Cardiac Arrest caused by Hypokalaemia due to Pneumonia. He was transferred from Medway Maritime Hospital on 6th December 2019 following Cardiac Arrest having been admitted on 4th December with seizures, lower respiratory tract infection and Hypokalaemia. A history of diarrhoea and vomiting was caused by diversion of blood away from the gut as physiological compensation rather than infection. His Becker's Muscular Dystrophy and complex history meant that Luke was unable to correct his potassium as he had lower muscle mass and this resulted in total potassium depletion and raised heart rate. Luke's cardiac arrest was avoidable had his Hypokalaemia been appropriately recognised, managed, and treated in hospital.

Luke had a complex medical history with Becker’s Muscular Dystrophy (later confirmed on genetic testing) and was being treated for a chest infection. He was admitted to Medway Hospital with a lower respiratory chest infection and acute gastroenteritis 4 December 2019. He had a fever, tachycardia and hypokalaemia (deficiency of potassium in the bloodstream) with high lactate treated with IV fluids with potassium and antibiotics. Further fluids were prescribed without potassium. On the evening of 05 December, Luke was started on humidified oxygen for mild respiratory distress and his oxygen levels were being monitored. A blood gas was requested, it was not performed. IV fluids were restarted (without potassium). His arm was noted to be very floppy. Luke went into cardiac arrest whilst an inpatient at 06:55 on 06 December 2019 from which he was resuscitated and transferred to the PICU at Evelina Children’s Hospital the same day where he was treated and later died on palliative care.

The Trust has taken action to address the conclusions of its Root Cause Analysis and has learned and disseminated lessons, improving its processes. This Report is made to assist learning in the public interest as evidence was heard from a consultant from a specialist children’s hospital that total body potassium depletion is not always recognised in children with myopathies who become unwell. They may present with diarrhoea and vomiting due to shunting of the blood away from the gut to protect vital organs such as the brain and heart.

(1) Luke had complex needs and was awaiting results of genetic testing confirmed as Becker’s Muscular Dystrophy. He had not been eating and drinking, had loose stools and vomiting that had progressed over a five-day period in a background of a chest infection. His parents had sought and followed medical advice from the hospital by telephone. Luke continued to deteriorate, and he was admitted. The Trust took some steps on admission to address his low potassium.

(2) Evidence was heard from a Consultant from the Evelina Children’s Hospital that they get almost 2000 referrals a year and many have diarrhoea and vomiting as a first symptom. Issues relating to metabolic derangement in a child with myopathies is not always recognised as total body potassium depletion and that treatment may need to be undertaken in intensive care due to the increased amounts of potassium required to correct the derangement and manage clinical risks:

(i) Children with Myopathies - have low muscle mass that compromises their ability to correct their own potassium levels when unwell.

(ii) Luke had a chest infection, however his low potassium made him weaker and as it progressed, he was shunting blood away from his gut to compensate (this assists to protect the vital organs such as the heart and brain) which resulted in loose stools and vomiting; this was not a consequence of gastroenteritis. One of the early symptoms of this shunting process is a high heart rate.

(iii) A bolus of potassium and fluid resuscitation to treat gastroenteritis was not sufficient to treat total body potassium depletion which requires a central line with significant potassium replacement in intensive care to manage clinical risk.

(iv) Development of a chest infection requires a child to breath harder and this becomes more difficult in a child with myopathies that is already weakened due to low potassium and will not present with the usual symptoms of respiratory distress.

(v) As Luke was treated with oxygen therapy, the monitor alarm set for oxygen saturations did not sound as his oxygen did not deplete and he went into cardiac arrest