We’re sorry your baby died. We don’t know the cause. We’ll classifyit 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 least comforting things that a grieving parent could 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 have their hearts checked because babies don’t just 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, including 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 in the 50th percentile 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 saw a cardiologist and Phyllis was diagnosed with Long QT Syndrome, a condition that 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 raises 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. When it comes to infant death, the answers to the following 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 or drug use, 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, since childbirth is possibly the most strenuous activity a woman will ever endure. Finally, and perhaps most importantly, heart screenings should be mandated for surviving parents and siblings of a baby who dies from SIDS. 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. 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
For more information about SIDS, visit our Best Resources List.