This is amazing. Just imagining a world where we might have screening for this and prevention for the babies at risk... I mean, imagine being able to not worry about SIDS as a new mum. I can feel the weight of anxiety lifting off my shoulders from here, and my baby's well past the age to worry about SIDS. I used to not sleep, just lie there looking at him and occasionally reach out a hand to check he was still breathing.

[–] ProxyMusic 0 points Edited

In the US, it's already mandatory in all 50 states, territories and the DoC that all newborns undergo screening for a variety of genetic, hormone-related, and metabolic conditions that cause serious health problems - using blood taken from a heel prick shortly after birth. So I would imagine that it should be relatively simple to add this condition to the list of conditions that are tested for.


I believe it would be possible to add the SIDS condition to the newborn screening panel through an administrative order from the relevant health authorities in each jurisdiction; passing new legislation wouldn't be necessary.

This is a paper that describes the processes and procedures involved when Wisconsin became the first state in the US to add SCID (severe combine immune deficiency) to its newborn screening test panel in 2008. Since then, all other US states and jurisdictions have followed suit, so that it's been the rule for a decade now that all babies born in the USA are screened for SCID.


Fantastic news! I hope we can stop being terrified of babies going to sleep on their tummies.

Terrific to have an explanation, finally. So sad for all the SIDS deaths, and for the parents who blamed themselves - and were blamed by others. There have been cases where mothers who lost multiple babies to what might have been SIDS were accused and convicted of murder.

Wow i have goosebumps!!! What an amazing breakthrough!! To all parents who have lost a baby to SIDS , i hope this brings a little peace.

Wow! That is so cool!

I have a friend who lost her baby this way, I believe Elon Musk lost a child this way as well. I know it doesn’t help those people who have lost children and I’m deeply sorry the answer came too late but I’m so happy that hopefully soon no more parents and children will suffer this way. I hope they name the prevention and/or tests for this women!

This could really be a game changer. It's so scary as a new parent, preparing yourself to find your baby dead every time you go in to check on them. I knew the odds were really low, but I couldn't shake the fear anyway.

Gonna say "overly tired mothers because husbands don't help out enough" and check back in after I read the article!

Damn I was wrong, but it is good to know that they know of the genetic defect and maybe can screen for it ahead of time. I wonder if the equivalent of a baby cpap machine would work? Although I worry that it would be a lifelong struggle for these poor littles.

Is it a genetic defect? The article didn't say genetic, just that they'd found the mechanism in the brain. I thought that fetal alcohol was a risk factor in SIDS. It's possible exposure to something (alcohol, something else, all sorts of things) could cause this defect.

My little sister died this way, and my mother was still sad about it when she died last year. She had my unbaptized sister's name added to her gravestone (I haven't seen it yet, but that's what I was told), since sis didn't get her own – sis is buried at the back in one of the unmarked sections with other babies and suicides.

I extrapolated genetic due to the fact that the article stated that the babies were predisposed to have less active levels of butyrylcholinesterase (BChE) which are encoded by the encoded by the BCHE gene, but there is a high chance I am misinterpreting. (I'm a programmer, not a biotech wizard!)

One issue with SIDS is that, historically, it is often treated as a catch all for the death of children between 1 to 6 months old, not to mention the fact that the reasons for SIDS has been flip flopped around so much. 🤷‍♀️ The problem is that too many deaths have been thrown into the same "cause of death" bucket, but these deaths are not always actually caused/instigated by, the same thing.

In my (uneducated and overall useless) opinion, a child who suffers from fetal alcohol syndrome and passes in their sleep is not a SIDS death, but child that has died from complications related to fetal alcohol syndrome. Now, FAS might have an effect on the child's active levels of BChE, but should that death be considered a SIDs death, or a death due to complications of FAS?

Sorry my brain is rambling at this point.

I am sorry about your sis and mother, I never understood not letting unbaptized babies be buried in family plots, It just seems hurtful. But I am also not of the faith.

That is terrible that your baby sister was buried in an unmarked section of the cemetery! Is this a religious (Catholic) cemetery and the decision to bury her there made because she was unbaptized? I'm glad your mother reclaimed her baby by having her name inscribed on her own gravestone.

[–] Lumos 6 points Edited

I think an apnea monitor would work. An alarm goes off if the baby stops breathing to hopefully wake the baby and alert the parents.

A baby in my family had to have one for a few months. Technology may be even better now.

It would be interesting to know if a person would grow out of it or not.

There actually are monitors that you can currently buy that sounds an alarm when the baby's blood oxygen dips. I think one is called the Owlette, I almost bought one when my daughter was born because I was so terrified of SIDS.

Here is another one I found: https://www.mylevana.com/products/oma-sense?gclid=EAIaIQobChMI2t6Dvcrc9wIVx9aGCh3y-wmMEAAYASAAEgKh6vD_BwE

Those types of monitors are a bit of a grift though, they are all super expensive so lower income moms would be hard pressed to buy them, and there is zero liability or quality control generally attached to them.

[–] Julie92845 0 points Edited

It would be interesting to know if a person would grow out of it or not.

I'm thinking they would, since the odds of dying in your sleep as a baby are higher than in toddlers, older children, and adults. If this was a condition you didn't grow out of you'd think more older children would be dying from it.

Unless of course, the condition just takes most of them as babies and there's only a few left to die at older ages eventually.