Parents mourn toddler after inherited heart condition goes undetected

Elmar Pétursson was 18 months old when he died on 14 January after a fever-induced cardiac arrest. His parents, Berglind Ólafsdóttir and Pétur Guðnason, later learned that he had long QT syndrome type 1, an inherited heart condition that can cause abnormal heart rhythms and sudden death, mbl.is reported.

Five days before his death, Elmar developed a high fever that led to a febrile seizure, something he had experienced several times before. This time, however, he went into cardiac arrest.

Resuscitation was successful, but too much time had passed and Elmar had suffered severe oxygen deprivation. He was kept alive until it became clear that nothing more could be done. His parents then had to make the decision to disconnect his ventilator.

“The doctors told us that it was not really possible to continue. The brain damage was so extensive that he could not live with any dignity,” Pétur said.

He and Berglind spoke to mbl.is at their home in Breiðholt. They described a home that had previously been full of life but had been filled with oppressive silence since Elmar’s death.

The couple were given time to say goodbye to their son. They changed his nappy and dressed him before hospital staff took over and disconnected the ventilator. They were also given time with him afterwards.

“Then we went home without him, which was very difficult, and a terrible period began,” Pétur said.

“It is so wrong to walk out of a hospital without your child,” Berglind added.

After returning home, the parents were troubled by questions about what had happened and whether anything could have been done differently. They wanted answers and decided to pursue them.

Medical investigations found that Elmar had long QT syndrome type 1, a disorder affecting the heart’s electrical conduction. The condition causes the heart’s ventricles to take longer to contract and relax. Symptoms vary, but the syndrome can lead to abnormal heart rhythms and sudden death.

If an electrocardiogram had been performed during one of Elmar’s earlier febrile seizures, the prolonged interval would probably have been detected. The condition could then have been controlled with medication.

“We had taken him to hospital so many times, and all the tests that were carried out included an MRI, which is extremely expensive and not easy to access. An electrocardiogram is readily available, does not cost much and is easy to perform. If only someone had thought about the heart,” Berglind said.

She said an electrocardiogram was always taken from an adult who arrived at hospital with a seizure, but this had not been part of the procedure for children. That has now changed, and children who arrive with complex febrile seizures are given an electrocardiogram.

Elmar was born in Gothenburg on 20 July 2024 and would have turned two this summer.