If you can help then do something
April 25, 2002 1:01 PM   Subscribe

If you can help then do something Tech columnist Robert X. Cringely's baby, 74-day old Chase, died of SIDS this week. He's trying to get together people with engineering and medical expertise to lead a project to make low-cost monitors to help make SIDS a thing of the past.
posted by lisatmh (24 comments total)
Gawd, that is horrible, horrible. My heart goes out to Robert Cringely and his wife. And I hope his project succeeds.
posted by Holden at 1:23 PM on April 25, 2002

Fuck. Poor Cringely. 74 days. I am so sorry
posted by matteo at 1:30 PM on April 25, 2002

I hate to hear that happening to ANY family.
posted by Hugh2d2 at 1:44 PM on April 25, 2002

SIDS deaths are unimaginable. I don't know how Cringely has the presence of mind to write at a time like this, but I hope it's helping.

As for his plan, though, as the parent of a 10-month-old, I wouldn't strap him up to a monitoring device just to provide data for future SIDS research.
posted by rcade at 2:04 PM on April 25, 2002

rcade, would you strap it to a monitoring device that could warn you if (God forbid) your child started showing any warning signs of apnea/SIDS?

I don't know if Cringely is planning on that kind of capability -- I imagine it would make the device more expensive and prone to breakage -- but if parents had some incentive to participate, maybe...
posted by lbergstr at 2:11 PM on April 25, 2002

What Cringely is proposing is hooking a $10 sensor device to 100,000 babies just to collect data, hoping the data will lead to a breakthrough. Since the initial device won't do anything to combat SIDS, and is likely to irritate the hell out of babies, I can't imagine its widespread adoption.
posted by rcade at 2:20 PM on April 25, 2002

To answer your question, if a device was available that could detect SIDS, my wife and I would've considered it strongly. We'd weigh the invasiveness and safety of the device against the risk of SIDS.
posted by rcade at 2:21 PM on April 25, 2002

Incidentally, the kid's real name was Chase Stephens -- Cringely being a pen name.

This feels quixotic to me, as well -- a geek's response to a problem. There must be a way to fix it! I'll build a tool! There's a grain of sense to it, true: this could come up with a new development that will open up the field for research again.

The NIH believes its Back to Sleep Campaign, encouraging parents to put children to sleep on their backs, as well as avoiding soft bedding and taking extra precautions in cold weather, has had tremendous impact, reducing deaths by as much as 38 percent. But that's not all -- there appear to be physical differences that increase the risk, including serotonin production and brainstem structure.

So I don't know where the monitors come in. Brain scans of all children in the study? Correlate that data with the monitor data? Wait for kids in the study to die? (These types of studies always raise ethical issues.) What about making the study double-blind? I'm not sure how this is supposed to work. This money might be better spent at the existing study framework.
posted by dhartung at 2:54 PM on April 25, 2002

Sorry, rcade, I didn't mean to call your child 'it'. Sigh.
posted by lbergstr at 3:15 PM on April 25, 2002

SIDS deaths suck beyond all imagination. My first memory is of my baby brothers death from SIDS and the whole palava surrounding it. I just didn't know what was going on, nobody knew what was going on or why. It's deeply, terribly scary. You don't know why they died, you don't know anything. It's unexplained and all your insecurities and blame rush into that void. If anyone can do anything to stop other people going through it then they will have made the world a better place to live in.
posted by nedrichards at 3:24 PM on April 25, 2002

Wow. That is totally, completley horrible. . His kid was sitting in his lap when he died. That's the last time I do email with Baby Jasper (warning: self link to my cute baby).

At first glance have to agree with Dhartung on this one -- this seems to be the productive greiving of a bereaved father. And, there's already a pretty serious effort under way. The currently avaliable monitors apparently don't do a good job.

But, on the otherhand, sometimes an emotional nudge in the right direction is all that's needed to develope new technology. I bet the biggest problem is that the folks for whom this is a big draw (parents) are either in the very small group of having lost a kid to SIDS, or in the much larger group of people who consider themselves lucky that it didn't happen to them, but are too distracted raising kids to have much input.

You have kids, Dhartung?
posted by daver at 3:38 PM on April 25, 2002

As the father of an 18-month old and a 34 day old I feel for him, and hope he succeeds. In the meantime, I can only recommend the following for anyone who has a baby in the future:
Baby Monitor
It works really well, if I take my son off it sets off the alarm without fail. I tested it by setting a weight on and it still goes off, it really senses any little movement.
posted by tetsuo at 3:48 PM on April 25, 2002

I agree that the being in the lap thing that hit me hard. I've done the same thing with both my children. You think that if you are right there with them, nothing terrible could happen. This strikes at the core of that belief.

Next thing someone will be telling me that all that "are they breathing" checking I do is worthless too. My daughters are 6 & 3 and I think I'll still be checking them when they are 36 & 33.
posted by Argyle at 5:09 PM on April 25, 2002

I'm a parent of a 9 month old, and I would put a sensor on him to gather data if I were convinced the sensor wouldn't hurt him. During pregnancy I also gave blood three times to help researchers who were trying to discover what causes preeclampsia, a dangerous rise in blood pressure in pregnant women (I didn't have this, but many people participated, and they tracked who got it and who didn't, and tried to correlate other factors). So, I think there is a population of people who will help even if they have no direct benefit, as long as they think the study is not harmful to them and may provide a benefit to others.
posted by lisatmh at 5:27 PM on April 25, 2002

Oh, and I check to see if he's breathing all the time too. I feel stupid when I'm doing it, but I do it anyway.
posted by lisatmh at 5:31 PM on April 25, 2002

Horrible story, honestly; SIDS sucks.

I'm not sure, though, why he felt the need to include the dig against the medical community ("the medical establishment seems to have given up") -- while it sounds like a grieving parent lashing out against not having anything to pin the death of his child on, it's also patently false. There's plenty of SIDS research going on, in pediatrics and neonatology departments all across the world, and it's sad that Cringley ignores that. Some places, in fact, seem to be doing exactly what he's proposing, only doing so in a scientific manner, so that the data actually has validity, and conclusions can be drawn from it.

Suffice it to say that there are a ton of dedicated researchers out there who are pushing to discover more about SIDS, and I'm not sure that what the world now needs is a tech columnist jumping into that arena.
posted by delfuego at 5:39 PM on April 25, 2002

Well, you could shut him down as an outsider, Dr. Levine, or could have pointed him to like-goaled projects that would benefit from resources he can marshall, but probably not both.
posted by NortonDC at 6:34 PM on April 25, 2002

I'm not sure that what the world now needs is a tech columnist jumping into that arena.

You could have said the same thing about Jim Abrahams, the Hollywood producer who, motivated by his son's pediatric epilepsy, did his own research in the topic and helped rediscover and evangelize the Ketogenic Diet. Sometimes a motivated outsider has a lot to offer the medical community.

In this case, I think the circumstances of Cringely's tragedy -- his son dying in his lap -- and his quasi-celebrity might be enough to get some media attention back on SIDS and current needs in the SIDS research community. Both good things.
posted by rcade at 7:39 PM on April 25, 2002

The monitoring idea sounds a bit cockamamie to me. It would be nice to have at least a minimal scientific hypothesis before launching such an expansive (and expensive effort.

Just the same, I'm willing to cut the guy immense slack right now. What a tragic loss.
posted by chipr at 7:45 PM on April 25, 2002

Since the initial device won't do anything to combat SIDS, and is likely to irritate the hell out of babies, I can't imagine its widespread adoption.

Wouldn't this depend on just what the device was? I would imagine that these days, a device that would do what he wants ("measuring and recording respiration, heartbeat, body temperature, and anything else we can think of") could be made almost as thin as a Band-Aid®. The baby wouldn't even notice that, especially if you put it on the small of his/her back or something.

Also, a question. Cringely wrote:
Sleeping solely on their backs reduces the incidence to about one in 2,000 babies. But strict back sleeping also has a developmental downside because apparently the route to genius is best traveled on the belly.
Was he just trying to add a little levity to a very sad article, or is there some scientific truth to this? Babies that sleep on their stomachs become smarter?
posted by aaron at 7:46 PM on April 25, 2002

Sometimes a motivated outsider has a lot to offer the medical community.

For those of you with Wall Street Journal access, there's an article on page D1 today on this very subject. The headline is "Hiring Your Own Scientist to Find a Cure." Unfortunately, you'll need a subscription to read it online.
posted by aaron at 7:57 PM on April 25, 2002

Wow, really tragic. I admit I share a lot of the "he's unrealistic" sentiment, but then again, I'm a longtime Apple fanatic and former early employee at HotJobs- two companies that became successful because an outsider decided that there was a better way to do something.

True, there's probably a lot of research going on, but I don't think this needs to be a zero-sum game. What are the odds that some scientist is sitting at his desk, wishing he had a better piece of software to crunch his data? Or a way to use distributed computing to crunch it faster? Or has an idea about an electronic sampling device but no funding to design it (let alone a lack of how to even approach it, given that they're medical folks, not engineers)?

Seriously, why can't this be something SourceForge is used for? Yes, there's a lot of secrecy and competition to these studies, but why can't certain pieces of them be "open source"? There's probably nothing lost in trying. Hell, if every self-proclaimed hardcore geek spent 1/4 of the time he spends on Slashdot just throwing around ideas with other developers, *something* will come of it.
posted by mkultra at 6:31 AM on April 26, 2002

The solution might not be a sensor but a simple antibiotic injection.
"A common bacterium implicated in peptic ulcers and heart disease may also be a cause of sudden unexpected death in babies (SIDS), suggests research in the Archives of Disease in Childhood.
"Samples of tissue from the stomachs, wind pipes, and lungs of 32 babies up to seven months of age who had died of SIDS were analysed for the presence of two genes. The two genes, H pylori ureC and cagA, both indicate the likelihood of infection with Helicobacter pylori bacteria. The same tissue samples from eight babies who had died of other known causes were also examined for comparison.
"One or both genes were present in one or more tissue samples among 28 of the 32 SIDS babies, a prevalence of 88 per cent. The genes were found in only one of the eight comparison babies. The prevalence of H pylori infection in developed countries runs at around 2 per cent.
"It is very difficult to study how the bacterium might cause SIDS, because by definition the babies are dead when examined, and there are no obvious signs of SIDS before death. But, say the authors, H pylori infection produces an inflammatory response as well as large amounts of urease. And urease may induce the production of ammonia, which may be a critical factor."
Check it out at EurekAlert.
posted by Allen Varney at 5:56 PM on April 26, 2002

Cameron points out that his co-worker, the inventor of Tetris, is working on a project just like the one Cringely describes.
posted by anildash at 11:41 AM on April 29, 2002

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