Luca & Nico's story
When Morgan Daversa realized her 11-month old son, Luca, fainted, she brought him to the pediatrician and received a simple diagnosis: breath holding. Over the course of four years, the Daversa family trusted this explanation for each of the six fainting spells Luca experienced. Since breath holding is fairly common in young children and known to run in families, Morgan was not entirely surprised when at 9 months old her second born, Nico, experienced a fainting episode of his own.
Nico’s fainting was different though. It was more severe with a full-blown seizure. His initial diagnosis matched his brother’s, but because of the seizure Nico was also referred for an EEG, which produced normal results. Morgan’s maternal instincts led her to dig deeper. She requested an EKG to check his heart rhythm after reading about heart related causes for fainting on the STARS (Syncope Trust and Reflex Anoxic Seizures) website. After reviewing the EKG, the pediatrician diagnosed Nico with Reflex Anoxic Seizures (RAS), a form of syncope encountered mainly in small children. The Daversa family realized that this was also the real cause of Luca’s fainting.
The Daversa boys’ syncope has been managed through iron supplements. As many children do, at age 5 Luca has grown out of his syncope episodes. RAS still affects 18-month old Nico; it occurs in clusters of two or three fainting spells every month or two.
While Luca’s fainting episodes had a minimal impact on their family, Nico’s more severe episodes often created an anxious family environment. “Our relatives would snap at the other children if they ran too close to Nico or if they were being too loud because they thought that it would trigger an episode,” Morgan says. “Even though there are gaps of time when Nico is fine, worrying about ‘the next time’ puts everyone on edge.”
Through her experience raising two boys with RAS, Morgan noticed the general public has a lack of understanding about fainting. “The schools were afraid when we told them about the boys’ condition because they did not understand Reflex Anoxic Seizures,” Morgan explains. “Even the doctors didn’t consider it as a diagnosis until we pressed for more tests.” With the support of STARS and other groups, Luca, Nico and their family have learned to adjust to the challenges of living with syncope.
