SIDS Breakthrough: Heartbroken Families Share Their Babies' Stories

Families affected by the tragic condition known as Sudden Infant Death Syndrome (SIDS) have spoken out about their experiences after a new study suggested scientists are close to identifying a cause.

SIDS is the sudden, unexplained death of a baby younger than one year of age that does not have any apparent cause. The disorder is sometimes referred to as "crib death" or "cot death" since it is associated with the time when the baby is sleeping.

SIDS is the leading cause of death among babies aged between one month and one year, with the vast majority of deaths taking place before a baby reaches six months of age, according to the National Institute of Health states. Each year there are about 3,400 cases of sudden unexpected infant deaths in the U.S. according to the Centers for Disease Control and Prevention (CDC), a classification that includes SIDS.

Holding baby's hand
A stock photo shows an adult holding an infant's hand. Scientists have reported a step towards identifying a cause for Sudden Infant Death Syndrome (SIDS). hallohuahua/Getty

By definition, the cause of SIDS is unknown. The condition can be painful for bereaved parents who are left without answers.

Some evidence has suggested that infants who die from SIDS had a brain condition affecting nerve cells that might control vital functions like breathing and heart rate, but other possible factors had also been identified.

Scientists have now pinpointed a chemical known as Butyrylcholinesterase (BChE), the activity of which they found to be significantly lower in babies who died of SIDS compared to living infants or those who died of conditions other than SIDS.

The finding could mean that doctors will be able to identify infants at risk for SIDS prior to death and open up new research into prevention.

The study has proved extremely popular on Twitter, where it was hailed as an important scientific breakthrough. One tweet describing the research had gained more than 60,000 likes and well over 1,000 comments as of Friday.

The news prompted several Twitter users to speak out about their own experiences of losing loved ones or their own children to SIDS.

Kathykiscool wrote that she lost her first son at 38 weeks in what doctors said was SIDS in utero, adding that "the tech cried while doing the ultrasound".

"Although my SIDS happened in 1991 the emotion and pain is still there," she told Newsweek.

She said she "never really got answers" when she lost her infant to SIDS when she was just 19. "I am thankful that there are people trying to understand what causes SIDS to happen," she added.

Getvalentined wrote that her mother lost a baby sister to SIDS more than 50 years ago and that her family "never recovered". She told Newsweek: "The breakthrough will certainly help save a lot of babies—but I don't think people realize how many families it will save too."

Another user, Chimmy419, wrote of her brother's death over 40 years ago and the effect it had on her mom. She told Newsweek: "I'm so glad that there are finally some answers. I've watched my mom go through so much grief. The anxiety of SIDS trickled down to when I had my own children. Last year my cousin's baby also died of SIDS and I just watched it hurt her all over again."

Believefaeries recalled the loss of her daughter Melanie who died 33 years ago just 7 weeks after she was born due to SIDS. She told Newsweek: "I was surprised at first because you don't hear of anyone talking about SIDS. The tears started of relief flowed knowing that the researchers were getting closer to finding a cause of the mystery. I am so grateful!"

The new SIDS study, titled "Butyrylcholinesterase is a potential biomarker for Sudden Infant Death Syndrome," was published in the journal eBioMedicine on May 6.

Update, 5/13/22, 11:35 a.m. ET: This article has been updated to include more statements and tweets.