We’re sorry your baby died. We don’t know the cause. We’ll classify it as sudden infant death syndrome (SIDS).

This is the speech that about 3,000 parents hear each year when their infant does not wake up. It is one of the most discomforting things a grieving parent can hear. If it’s unbelievable that a seemingly healthy baby can just die, it’s incomprehensible that there is no known reason.

It is the explanation the Sudmans expected to hear on January 24, 2005. Fortunately, their pediatrician told Phyllis and Darren to “get their hearts checked because babies just don’t die.” That test provided a diagnosis, likely saved another life, and launched this organization.

What is Sudden Infant Death Syndrome (SIDS)?

Sudden Infant Death Syndrome is the term used when an infant, under the age of one year, dies suddenly and unexpectedly, and after a thorough investigation, the cause is unknown. The investigation can include a scene visit, autopsy and review of medical history. It is subcategory of sudden unexpected infant death (SUID).

What is Sudden Unexpected Infant Death (SUID)?

According to the American Academy of Pediatrics, there are several causes of SUID, that include suffocation, asphyxia, entrapment, infection, ingestions, metabolic diseases, arrhythmia-associated cardiac channelopathies, and trauma (unintentional or nonaccidental).

What Should Parents Know?

Expecting parents who read before their child is born know about sudden infant death syndrome. It is the bogeyman of parenthood. A baby goes to sleep and never wakes up. Fortunately, it is very rare. Every year, 3.8 million babies are born in the United States. Only 3,000 die suddenly, without explanation. That is one-tenth of one percent.

The National Institute of Health manages the Safe to Sleep campaign. It educates parents about creating safe sleep environments and avoiding risk factors that can lead to sudden infant death.

The Heart and SIDS

Simon was a seemingly healthy three-month old baby boy. He scored 8 and 9 on his APGAR. He was 50% for height and weight. He smiled for the first time at 47 days. He died during a nap five weeks later.

Following his death, his parents got their hearts checked and Phyllis (mom) was diagnosed with Long QT Syndrome – an arrhythmia. The condition disrupts the normal heart rhythm.

In 2000, a group of researchers in Italy studied 34,000 SIDS cases and found that Long QT Syndrome was present in half – 50%. Research studies conducted in the United States attribute about 12% of all SIDS deaths to Long QT Syndrome.

This begs the question. If Long QT Syndrome is responsible for the death of at least one out of every ten babies, why aren’t we telling parents about it? Long QT Syndrome is typically an inherited condition, so a family history can reveal risk and prevent sudden death. The answers to these questions are so important:

Has anyone in your family died sudden or unexpectedly before the age of 50? This includes incidents like drowning and car accidents. If there were no known extenuating circumstances like weather, drugs, etc., look further. Don’t simply rely on the setting – seek the cause.

Has anyone in your family experienced or survived sudden cardiac arrest? Cardiac arrest can result from a variety of conditions, but some of them can lead to sudden death in children. Get the answer to this question.

Has the mother or father ever passed out during or immediately after exercise? This is a big warning sign of an undetected heart condition and that condition could be passed on to your children. Don’t blow it off. Get it checked out.

There is more that can be done. We can find a way to conduct heart screenings on newborns. We can check the hearts of mothers before they deliver. Child birth is the most strenuous activity a woman will ever endure. Should we make sure her engine is working properly? Finally, and perhaps most importantly, heart screenings should be mandated for surviving parents and siblings of a SIDS baby. This was our story. It could be yours too.

Genetic Testing for SIDS

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

Laboratory for Molecular Medicine

Transgenomic/FAMILION

Masonic Medical Research Laboratory

Correlagen

GeneDx

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