May 25, 2023 5:47 AM   Subscribe

Trigger warning: SIDS question.

My whole life, my mother told me that I'm a "SIDS Survivor". Meaning, I had SIDS, died and was resuscitated. Is this even possible?

This is what my mom always told me. That I was found blue and dead in my crib when I was 6 months old by my brother, and was resuscitated. I never thought too much about it until just now when I read an article about a potential correlation between SIDS and serotonin receptors.

This lead me to some googling and finding out that SIDS Survivor specifically refers to the surviving family of a baby that died of apparent SIDS. And I could only find 1 study that showed that SIDS babies have a "dismal" outcome:

So now I'm questioning everything. My mother has been dead for 11 years, so I can't follow up with her. Is there any data out there indicating that babies that had apparent SIDS ever survived?
posted by Cat Pie Hurts to Health & Fitness (10 answers total)
There is evidence that children can have "near-miss" SIDS, for example this 1987 study "Near-miss sudden infant death syndrome: clinical findings and management". Maybe searching "near-miss SIDS" would give you some more relevant results, as opposed to SIDS survivor.
posted by hepta at 6:05 AM on May 25 [5 favorites]

This is a foggy childhood memory but one of my cousins had SIDS and had a monitor that would go off (note that they don't seem to have been proven all that helpful, but he did have one) and I'm pretty sure he was resuscitated at least once. So I don't think it's outside of the realm of possibility.

He's great, proud dad and former soccer athlete.
posted by warriorqueen at 6:17 AM on May 25 [4 favorites]

SIDS is a post-mortem differential cause of death - it means they can't find via forensic examination any other reason why a child under 1 year old died. I don't expect there are any cases of survival post-post-mortem, so I would say your mother's characterization is not technically accurate.

Your mother may not have been given much explanation, or a hand-wavy one at best, and she settled on this narrative to encapsulate the trauma she experienced.

"I stopped breathing at least once as a baby" is probably most accurate, with so many of the details lost to time. Babies do that, it is sometimes never noticed and sometimes gets scary, but is not the same as actually medically being dead, if that particular distinction is what you're trying to get at.

We know SO much more now than even 20 years ago, I'm certainly not faulting your mother for going with that characterization, and it may well have been the information she was given. I guess it depends on what you need, emotionally, from this re-examination of the family lore. What will help you here? Are you trying to explain your depression? Do you have sleep breathing disorders, as an adult? Do you believe you suffered organ damage in that incident? Do you fear she's lying entirely, or that someone deliberately caused you to stop breathing? Are you worried that you are the way you are entirely because of this event? It is easy to stress yourself out really badly over an adverse childhood event you have no control over to the exclusion of all the things you can actually control.

I personally would not use a term that generally belongs to people with dead loved ones who for real aren't coming back, even if there is a slim chance you experienced medical death with no obvious after-effects somehow.
posted by Lyn Never at 9:10 AM on May 25 [21 favorites]

I'm not a doctor, but am related to someone whose first baby died (was found dead in his crib in the morning) and the death was attributed to SIDS (her second baby was fine, turning 30 in a few days).

I personally could believe that something happened to affect your breathing and that you were revived.

Keep in mind that SIDS is not an illness, per se: "Sudden infant death syndrome (SIDS) is the sudden and unexplained death of a baby younger than 1 year old. A diagnosis of SIDS is made if the baby’s death remains unexplained even after a death scene investigation, an autopsy, and a review of the clinical history.

SIDS is part of a larger category of unexpected (as opposed to unexplained) infant deaths called SUDI (sudden unexpected death in infancy). Babies who die suddenly but whose causes of death are later explained (infection, brain abnormality, cardiac dysfunction, etc.) also fall into this SUDI category."

posted by gudrun at 9:13 AM on May 25 [7 favorites]

It is possible for a baby to stop breathing and be resuscitated. At home medical events are really given bunch of question marks by the medical community. It's hard to stay what actually happened in a high stress, incredibly scary situation like this. For sure your mother believed you died and cpr saved you. It could very well be true. You could have also experienced apnea and spontaneously started breathing on your own without intervention. I had a child who breath held and passed out many times in her childhood with the very blue color, but she was never at risk of death from that even though it was very very very scary. Some people do attempt cpr on living people due to panic and limited training.

I can tell you that when my baby breath held ( she did this alot from birth and 30 seconds felt like forever). It really is possible this event lasted less than a minute. I couldn't accurately guess the timing of the events unless they were timed and it is something that happened fairly frequently the first year.

You could look up information on anoxic brain injuries which happen in people who have been without oxygen for over four minutes. But these run a wide range of people who were not breathing for awhile and resuscitated. It may not be applicable at all but may be more in the realm of what you are looking for.
posted by AlexiaSky at 9:29 AM on May 25 [1 favorite]

A close friend got home late and went to check on his infant daughter. She wasn't breathing. He works in an industry which required him to take CPR once a year, and he'd done it a week before. He picked her up and started breathing for her, and he and his wife got in the car and drove to the nearest hospital at speeds which were obviously completely unsafe. By the time they got there she was breathing on her own and awake.
The hospital kept her in for two nights, admitted they had no idea what had happened, and her parents took her home.
It never happened again.
posted by AugustusCrunch at 9:38 AM on May 25 [4 favorites]

There is a thing called a BRUE, which stands for Brief Resolved Unexplained Event. It’s where a baby seems to stop breathing, turns blue or pale, and may be floppy or rigid. The definition requires that it resolves before being assessed by a medical professional, but I don’t think that includes parental CPR or other resuscitation efforts, and it’s not clear if you know if the resuscitation in your case was done by a professional or not.
posted by MadamM at 10:25 AM on May 25 [3 favorites]

Ummm, yes - SIDS is just the term for, "baby stopped breathing and we don't know why, and they *died*", but the first two parts also happen regularly but people catch it in time and the baby is resuscitated. In colloquial language, people would understand that you meant the first two parts.

There are baby breathing monitors, and if you look through the reviews, the highest rated reviews are where they successfully alerted parents that the baby wasn't breathing, and they were resuscitated. The whole point of that monitoring is because it is possible to resuscitate most of the time.
Sometimes it's that the baby wedged themselves in a way that something restricted their breathing and they choked, there's breathing irritation like smoke, other times well, they aren't sure of the cause, but there's a theory that some babies autonomic nervous system just isn't fully developed, and screwed up, which would explain why it's literally something they 'grow out of'.
posted by Elysum at 2:59 PM on May 25

My younger brother died of SIDS at 9 months. As people have said, SIDS is a cause of death if no other cause can be found.

You cannot 'have sids'. If people are using it in this way, they are wrong. I have never heard it referred to in this way. I admit that the casual talk around this does upset me. It is possible that you had a medical event, but it wasn't SIDS if you didn't die.

Subsequently to my brother dying, my 2 other siblings had the breathing monitors. I can attest that the monitors go off all the time. We had literally dozens of false alarms, and in the end everyone in the family was sick of them. So I'm here to say that just because a monitor goes off, it does not mean that resuscitation is needed or that anything has happened at all.
posted by thereader at 12:38 AM on May 26 [1 favorite]

Response by poster: Thank you all for sharing. This is very helpful, and I have a much better understanding of what SIDS is. What happened with me happened in the early 1970s. It may have been handwaving away on the doctor's part. But my mother later became a medical professional, and still used the same phrasing. What's interesting is that I had 3 other incidents within the first year of my life where I needed to be resuscitated, but my mother never referred to those events as "SIDS". (I was very ill, super-premie, lots of problems).

My mother was a narcissist, so maybe what she told me was related to those behaviours. Also, I've understood for a long time it was entirely possible that the "SIDS event" was intentionally by my mother. There's no way to know at this point. But the information here definitely pushes the needle in that direction.

Anyway, I will definitely not refer to myself as a "SIDS Survivor" ever again. But I also have some fun new stuff to discuss in therapy next week!
posted by Cat Pie Hurts at 3:19 AM on May 26 [2 favorites]

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