Child’s cardiac arrest exposes inherited long QT syndrome

Elmar Pétursson, who died aged 18 months in January after suffering a cardiac arrest following a febrile seizure, had inherited long QT syndrome type 1, mbl.is reports. The condition can cause abnormal heart rhythms and sudden death.

Elmar had a fever and experienced a febrile seizure, as had repeatedly happened when he became ill. Resuscitation lasted more than 30 minutes, but he suffered severe oxygen deprivation and died several days later after his parents made the difficult decision to withdraw his ventilator.

Doctors initially believed Elmar had suffocated on vomit after vomiting during the seizure. His parents were not satisfied with that explanation and sought opinions from other doctors, who agreed that febrile seizures do not cause children to die and that there was no indication that this had happened in Elmar’s case.

Subsequent testing showed that Elmar’s father, Pétur Guðnason, his older brother and several other close family members also had the syndrome. The condition was already known in the extended family, but that information had not been passed on.

Medication can control the symptoms, making early diagnosis important. In Elmar’s case, the syndrome could probably have been detected with a simple electrocardiogram, but one was never performed despite repeated hospital visits and other, more complex examinations. Doctors had instead focused on neurological illnesses.

Elmar’s parents, Pétur and Berglind Ólafsdóttir, are seeking to raise awareness of the syndrome so that other families do not experience the same tragedy.

“If only someone had thought of the heart,” Berglind told Morgunblaðið.

Pétur and his older son, Úlfur, are taking part in the Reykjavík Marathon to raise pledges for the Elmar Pétursson Memorial Fund.