Families impacted by Sudden Infant Death Syndrome (SIDS) have spoken out about their ordeals as a new study showed scientists are on the verge of discovering a cause.

SIDS is defined as the untimely and inexplicable death of an infant younger than one year of age. Because it occurs when the baby is asleep, the disorder is commonly referred to as “crib death” or “cot death.”

According to the National Institute of Health, SIDS is the greatest cause of death among babies aged one month to one year, with the vast majority of deaths occurring before the age of six months. According to the Centers for Disease Control and Prevention (CDC), roughly 3,400 cases of sudden unexpected infant deaths (SIDS) occur in the United States each year.

SIDS has an unknown cause by definition. For bereaved parents who are left with no explanations, the situation can be distressing.

Some evidence suggests that SIDS victims have a brain disorder that affects nerve cells that control crucial processes like breathing and heart rate, although other causes have also been discovered.

Scientists have now identified Butyrylcholinesterase (BChE), a molecule whose activity was found to be considerably lower in newborns who died of SIDS compared to live infants or those who died of causes other than SIDS.

The discovery could lead to doctors being able to detect infants at danger of SIDS before they die, allowing for fresh study into prevention.
Several Twitter users responded to the news by sharing their own stories of losing loved ones or infants to SIDS.

Kathykiscool reported that she lost her first baby in utero at 38 weeks due to SIDS, and that “the tech cried while completing 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.”

My mom lost a baby sister to SIDS over 50 years ago. Her family never recovered, and what her parents did to cope haunts her to this day. I hope that this discovery means that, eventually, no other family has to go through what hers did.— nashi/valentine

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!”

“Butyrylcholinesterase is a potential biomarker for Sudden Infant Death Syndrome,” according to a new SIDS study published in the journal eBioMedicine on May 6.

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