Sudden Infant Death

Sudden infant death syndrome (SIDS) is the unexplained death of an infant under the age of one. Sudden infant death syndrome is sometimes called crib death due to the fact that infants often die in their cribs. Researchers are constantly working to better understand SIDS risk factors. One in every 2,000 babies born die from SIDS. With every passing year, we learn a little bit more about the factors that contribute to these deaths. Hopefully, with advancing medicine we will see a significant decrease in these tragedies.

What Causes SIDS?

The cause of SIDS is unknown. As such, it is typically offered as an explanation when there are no answers. Campaigns to change sleeping habits have led to a decrease in the number of infant deaths, but they have not helped shed light on the cause of death.

Research from the Mayo Clinic showed that up to 15% of all SIDS deaths could be linked to Long QT Syndrome, an electrical heart condition. If there is a known cause for what takes the life of one out of every ten, shouldn’t we be talking about it? We know all about the potential threats of second hand smoke, co-sleeping, fluffy bumpers and stomach sleeping. Why aren’t surviving parents and siblings getting their hearts checked?

This isn’t a hypothetical. Following the death of Simon, Phyllis and Darren (parents) were told to get their hearts checked. Phyllis was diagnosed with Long QT Syndrome. At a heart screening hosted by Simon’s Heart, Whitney Jones (see link) was diagnosed with Long QT Syndrome.  Soon thereafter, her mother was too.

We are trying to change the conversation by providing free heart screenings for students and supporting the efforts of the Corrine Santerian Newborn Clinic at Abington Jefferson Hospital as they provide heart screenings to all one month old newborns.

The Long QT Challenge

Electrical conditions, like Long QT Syndrome, create challenges for pathologists in determining the cause of death because once the heart stops beating, the electrical condition disappears. There are two ways to work through this. A child’s tissue can be submitted for a genetic test. There are several companies who provide this service. Unfortunately, it is not always covered by insurance and it can be very expensive.

Laboratories for Genetic Testing:


The parents and surviving siblings should get screened with an electrocardiogram (ECG). We believe that ECG exams should be a standard of care for any family that has lost someone under the age of fifty, suddenly and unexpectedly.

For more information about SIDS, visit our Best Resources List.