'It seemed like the right thing to do'

April 19, 2010 6:45 PM

When Raymond Dunn, Jr. was born in 1975, he had a fractured skull, an undersized brain, and severe developmental disabilities due to a lack of oxygen. He was not expected to survive his first year.

Even worse, he had severe asthma and food allergies that prevented him from eating any food but one: Gerber MBF (Meat Based Formula), an infant formula made from beef hearts, designed specially for babies who could not tolerate cow's milk.

In 1985, Gerber discontinued the manufacture of MBF in favor of a soy-based formula. Dunn's parents, Carol and Raymond, Sr., were devastated. Carol contacted Gerber and implored them to change their decision. Research director George Purvis (page 8, warning PDF) offered the formula free of charge to any company who would produce the food, but none agreed. Finally, Gerber rounded up its entire remaining inventory of MBF, got a waiver from the FDA and shipped it to Carol free of charge.

In 1990, though, Raymond Jr. ran out of MBF, and there was no more left, in the whole world. At that point, Gerber's nutritional research staff stepped up and volunteered to recover, clean and reassemble mothballed equipment formerly used to produce MBF. "It seemed like the right thing to do," said Gerber nutritionist Dr. Sandra Bartholmey. The company allotted more than a fifth of production space to the MBF line for a one-time, two year run of MBF. Two years later, they did it again, and then one more time.

When Raymond Jr. died in 1995 at age 20, he had about a year's supply of MBF left. His parents, Raymond and Carol, redirected the energy they had poured into loving and caring for their son, who never saw more than light and shadow, nor weighed more than 38 pounds, into helping other families with "medically fragile children." Today, the Raymond Dunn, Jr. Rainbow House provides residential support to medically fragile adults (warning PDF) in their upstate New York community.

posted by toodleydoodley (63 comments total)

(via)
posted by Horace Rumpole at 6:51 PM on April 19, 2010

wow
posted by HuronBob at 6:58 PM on April 19, 2010 [6 favorites]

I don't understand why that was the only thing he could eat.
posted by amro at 7:01 PM on April 19, 2010

And dude, a Weekly World News article?
posted by amro at 7:02 PM on April 19, 2010

And dude, a Weekly World News article?

Those are the hotsheets. You get all the real news from them.
posted by clarknova at 7:07 PM on April 19, 2010 [9 favorites]

I don't understand why that was the only thing he could eat.

More likely they found one thing that worked after trying many things that failed, and didn't want to subject him to all the potential hazards of other food he could be allergic to. I mean, I assume they didn't literally try every food, but food allergies can only be tested by trying them, and it's a process that necessarily involves triggering the allergies.
posted by wildcrdj at 7:08 PM on April 19, 2010

Couldn't they look at the ingredient list to figure out what they could feed him that wouldn't cause an allergic reaction?
posted by amro at 7:10 PM on April 19, 2010

I don't understand why that was the only thing he could eat.

Just a stab without reading all the links, but probably his severe asthma and allergies combined with a physical inability to eat a variety of foods limited his options to such an extent that he was left with only the one. Formula is generally produced under pretty strict conditions where cross-contamination is rare, so the MBF would be pretty safely assumed not to contain even traces of any of the allergens to which he was sensitive, and it provided complete nutrition.

This is an extreme case in just about every way, but it's not at all uncommon for infants to be unable to tolerate all but one type of formula, or even to be hypersensitive to traces of certain things in breastmilk. For example, I was unable to eat dairy while breastfeeding my younger daughter. Even if I ate an ostensibly non-dairy item that contained traces of whey or casein would, hours later, filter down and cause her to have a reaction--however, like most babies, she outgrew her issues and is now made almost entirely of cheese. Would that Raymond's parents had been so lucky, but in a different way, they were lucky enough.
posted by padraigin at 7:11 PM on April 19, 2010 [2 favorites]

The PDF link is borked in a couple of ways. What exactly was in the stuff?
posted by Burhanistan at 7:13 PM on April 19, 2010

I wonder if total parenteral nutrition would have worked? I suppose if any kind of eaten food at all worked, though, that would be the better way to go.
posted by strangely stunted trees at 7:18 PM on April 19, 2010

It was just wonderful of Gerber to do this, but for some reason my brain came screaming to a halt on the fact that Raymond, at 20 years of age, weighed 38 pounds and has yet to get past that.

There are a number of saints and heroes in this story, but good God was Raymond's condition ever tragic.
posted by orange swan at 7:18 PM on April 19, 2010 [1 favorite]

It's not immediately apparent from the links that he displayed much in the way of sentience. Is that known?
posted by Burhanistan at 7:24 PM on April 19, 2010

The Gerber family seems like a real stand up bunch. They produced a pretty good poet too
posted by Think_Long at 7:29 PM on April 19, 2010

one of the PDF links (George Purvis) was from a trade rag noting that he had retired and had worked extensively with USAID. The other was a release from the ARC of New York State talking about Carol and Raymond Dunn Sr.'s work on behalf of retarded people in New York.
posted by toodleydoodley at 7:31 PM on April 19, 2010

He was Captain of the Beefheart, there's got to be a twist,
Gerber's boy wonder who ate the Meat Based Formula dish.
posted by stbalbach at 7:35 PM on April 19, 2010 [3 favorites]

Also:
ARC of the United States

ARC of New York State

If you wanted to donate money or time - ARCs always need volunteers and money - you could hardly do better than the Associations for Retarded Citizens. They do a lot to make sure that mentally challenged citizens get to live meaningful lives. It is not easy to do when ARC budgets get hacked every time states need to balance their budgets. These are the people least able to advocate for themselves.
posted by toodleydoodley at 7:36 PM on April 19, 2010 [1 favorite]

The George Purvis PDF is here.

I really don't care if one of the links is from the Weekly World News. If someone else could find a contemporary newspaper account of Raymond's death, that would actually be helpful.
posted by maudlin at 7:43 PM on April 19, 2010

It's not immediately apparent from the links that he displayed much in the way of sentience. Is that known?
posted by Burhanistan at 10:24 PM on April 19 [+] [!]

truthfully, the WWN link was about the most informational one. Most of the articles focused on his parents' dedication and Gerber's compassion, rather than Raymond's abilities, although from what little they did say (gurgles, sighs, wheezes, half smiles, lies on his mat, sits in wheelchair, enough physical therapy to hold up his head for a while), maybe not a lot. It says he was able to see light and shadow, so he may have been able to respond to some commands to communicate?
posted by toodleydoodley at 7:50 PM on April 19, 2010

toodleydoodley: Just to pick nits, it's no longer the ARC (or Association for Retarded Citizens). The organization is now called The Arc. They changed it sometime in the 90s, when the term "retarded" fell out of favor. But otherwise, you're comment is right on. The Arc has always had a great commitment to advocating for people with developmental disabilities, and they do a lot of great work nationwide.
posted by lexicakes at 7:51 PM on April 19, 2010

If someone else could find a contemporary newspaper account of Raymond's death, that would actually be helpful.
posted by maudlin at 10:43 PM on April 19 [+] [!]

I searched NYT but I guess he wasn't deemed significant enough. His local newspaper, the Sullivan County Democrat (one of the links) only has online archives back to 2000, and I didn't find an actual obit on Google newspapers.
posted by toodleydoodley at 7:53 PM on April 19, 2010

thanks Lexicakes. they still call it The ARC in my county, but I live in the 1800s ;-)
posted by toodleydoodley at 7:54 PM on April 19, 2010

I don't understand why that was the only thing he could eat.

My brother is a Marine Biologist, and built and operates a hatchery and fish farm. When I was given a big tank of tropical fish, I asked him if I could feed them table scraps. He said that about the only thing from a human food store that I could safely feed them, is beef hearts from the butcher.
posted by StickyCarpet at 8:17 PM on April 19, 2010

The article never mentions if they ever tried anything involving: 1) a beef heart, 2) a pot boiling water, 3) a blender.
posted by StickyCarpet at 8:24 PM on April 19, 2010 [3 favorites]

Eraserhead.
posted by five fresh fish at 8:26 PM on April 19, 2010

The most sacred cow of all, is the cow that gives up her heart to sustain a baby. Mother Cow, Goddess of Compassion.
posted by five fresh fish at 8:31 PM on April 19, 2010

what I found most interesting is that the boy's parents did nothing, it seems, except work and care for him, yet they remained (apparently) happily married, according to the newspaper accounts. They were still together and working on advocacy projects for other "medically fragile people" at least a few years after he died (I couldn't find any follow up coverage of them from more recent times). Carol, his mother, points out that when he was born, everyone urged them to institutionalize him because the stress of his care was sure to "ruin their marriage."
posted by toodleydoodley at 8:35 PM on April 19, 2010

Sometimes, people are awesome. That goes for Raymond's parents and for the people at Gerber.
posted by danb at 8:53 PM on April 19, 2010

I searched NYT but I guess he wasn't deemed significant enough. His local newspaper, the Sullivan County Democrat (one of the links) only has online archives back to 2000, and I didn't find an actual obit on Google newspapers.

Oh, it's obvious that you did a lot of work to find all those sources, and I had already assumed that if you had been able to find a story from another source, you would have done so. This is a great post.

The article never mentions if they ever tried anything involving: 1) a beef heart, 2) a pot boiling water, 3) a blender.

The Times Daily article includes these details:

Gerber agreed to reveal its formula and the process for making MBF to any manufacturer who would agree to supply Raymond, but none was willing or able. ...

The unsold backlog prolonged Raymond's life, but didn't make it easier. ... His mother and her helpers had to brush his teeth, bathe him and dress him. To maintain his sense of touch, they ran his fingers through dry rice and beans. He slept in a small bed in his parents' room, but rarely for more than a few hours at a time.

"The little guy's been a 24 hour a day thing for the past 16 years," said his father. ... The Dunns have no other children. ...

His mother, whose life already was totally consumed with his care, sought help in dozens of letters to political and business leaders ... Gerber employees who had been working with Mrs. Dunn told their bosses they could assemble the equipment and special ingredients (including beef hearts) to make a limited run of MBF.

This couple and their helpers were already tending to Raymond with little or no time off. Even if they had somehow found the time to make their own food, they needed more than beef hearts to make a nutritionally balanced formula, and they needed heavy duty equipment to make a homogenous and easy to swallow gruel with no small, irritating, choke-inducing fragments. (Have you ever cooked beef heart? I have. It is not the most malleable organ meat out there.)

I'm sure that if the Gerber employees working with the Dunns had thought that a home-boiled and blended beef heart would work, they would have tried that before setting up an entire freaking factory run.
posted by maudlin at 8:55 PM on April 19, 2010 [6 favorites]

strangely stunted trees: TPN would be a last resort. It carries the problems of infection, venous access, and liver damage.
posted by SLC Mom at 8:55 PM on April 19, 2010

Now I'm curious about what lead someone to think of making baby formula out of beef hearts in the first place. I'm pretty sure that's the last thing I would ever think of to make formula with. I would like an FPP about that next, please.
posted by amethysts at 9:42 PM on April 19, 2010 [3 favorites]

@Lexicakes The Arc's a major employer up here (in the Catskills). We still mostly call it ARC, though.

I worked for Devereux, years back, and it's hard, good work. I just couldn't support myself on the pay... When you've a stressful, emotionally demanding job which also pays below poverty, burnout's likely. I still miss my clients, sometimes.
posted by ActualStackhouse at 10:15 PM on April 19, 2010 [1 favorite]

however, like most babies, she outgrew her issues and is now made almost entirely of cheese

I don't know about you guys, but I'm way more interested in this kid that is apparently made almost entirely of cheese than the baby formula thing. I want to hear more about that.
posted by DecemberBoy at 11:11 PM on April 19, 2010 [4 favorites]

Mmm, beef hearts =) Nom nom nom.

No hamburger. I stew a beef heart every couple of months, or so. Inexpensive and yummy. Beefy but with a silky texture. Makes great sandwiches - think store bought ultra-brined roast beef without the sodium/salty-ness and some resistance to the tooth with more beef flavour.

Pork hearts, imo, are a little more squooshy., and not as good. Pork tongue, however, doesn't require so much trimming as beef tongues, but beef tongues have better flavour - and again, better (firmer) texture.
posted by porpoise at 11:49 PM on April 19, 2010

I want to hear more about that.

Exactly.

Some cases are more unusual than others, but the cheese girl stands alone.
posted by pracowity at 11:55 PM on April 19, 2010 [1 favorite]

It ain't a popular view to hold, but it needs to be said; the cows providing the hearts that kept this kid alive had greater claim to sentience than this kid ever had and therefore are just as worthy of our moral consideration (if not more worthy). But heck, even if you're a speciesist and just care about humans, you should be able to see that essentially building an entire factory to keep a single kid alive is insane, tragic and deeply unethical when so many kids in developing countries can be saved for far, far cheaper.
posted by dontjumplarry at 1:33 AM on April 20, 2010 [12 favorites]

you should be able to see that essentially building an entire factory to keep a single kid alive is insane, tragic and deeply unethical when so many kids in developing countries can be saved for far, far cheaper.

That's true as far as it goes, but we all do similar things every day. None of us acts entirely rationally.

Every time you eat more than you need, or pay more than you need to pay for food, or feed a pet, or munch a snack, you're not sending that food money to Unicef to feed a kid who is dying of hunger right now because you didn't send that money. If you buy or rent an oversized home instead of spending the extra money on housing for the poor, you're leaving someone somewhere standing in the freezing wind or blazing sun. Every time you have a kid instead of supporting one somewhere else, you're acting irrationally. Our crazy parents did that and look what it got them.

So... here we are.
posted by pracowity at 2:24 AM on April 20, 2010 [13 favorites]

Bit of a false dichotomy there, don'tjumplarry. It's not really an either/or proposition (cept for the cows, of course). Every child deserves to be saved, if we're talking about deserving. Saving one is not necessarily an immoral act, or even amoral, regardless of how many are dying - and especially if you posit the actors would save no other child, just that one.

Empathy, charity, kindness; these are sentiments we need to draw out, not channel off under logistics and world-bearing shoulders. How many children have the Dunns helped since William died? How many children will the Dunns have helped by the time they die? How many people will those children help?

It's not so easy to trace these lines of compassion; their growth is organic, visceral, abstruse. Reducing humanity - because that's what I think it is - to a mathematical proposition ignores its longer term dimensions, and its power to inspire, create, impress. Everyone needs to believe in something, man.
posted by smoke at 3:12 AM on April 20, 2010 [8 favorites]

We're not bees.
posted by adipocere at 4:47 AM on April 20, 2010 [2 favorites]

It ain't a popular view to hold, but it needs to be said; the cows providing the hearts that kept this kid alive had greater claim to sentience than this kid ever had and therefore are just as worthy of our moral consideration (if not more worthy). But heck, even if you're a speciesist and just care about humans, you should be able to see that essentially building an entire factory to keep a single kid alive is insane, tragic and deeply unethical when so many kids in developing countries can be saved for far, far cheaper.

You're not a parent, are you?
posted by amro at 5:14 AM on April 20, 2010 [1 favorite]

The parents are easily understandable.

But the Gerber corporation and employees spent a lot of time and money doing this to save (sort of -- he didn't have much of a life) one kid rather than putting all of that time and money into giving lots of kids long, healthy lives.

You could look at this as a great kindness that the Gerber people did, but (just from a quick browse of the linked articles, mind you) I get the feeling that the mother maneuvered the Gerber people in a position where they just could not, from a PR perspective, from a financial perspective, from any perspective, say no:

Carol Dunn stock piled the formula but her supply ran out in 1990. She then appealed to Gerber for help. Gaining worldwide attention, her son quickly became known as the “Gerber Boy.” Gerber Foods came to the Dunns’ assistance and provided them with the very important formula

Gerber had to start up that production line again or become known (worldwide attention!) as the company that killed Gerber Boy.

Also, of course, you would act differently if you knew that only you -- not you and everyone else in the developed world, but your little team of baby slop manufacturers -- could save one particular kid whose frantic mother was always on the phone. How would you sleep if you didn't act? Even if you could look at yourself in the mirror, wouldn't your spouse and children give you the hairy eyeball for the rest of your life? So the Gerber people were kind of left without a choice from a personal angle, too. They had to go in and do the overtime to pump out those nasty little jars of goo for Gerber Boy.

I'm not saying they didn't want to do it anyway, but it sure looks like life gave them no choice.
posted by pracowity at 5:59 AM on April 20, 2010 [2 favorites]

the cows providing the hearts that kept this kid alive had greater claim to sentience than this kid ever had

My friend at work had a son with microencephaly. You know, he was a "pinhead." He lived for thirteen years. He had the mental capacity of a 9 month old. He spent about 40% of his life in and out of the hospital. I met him. I saw him smile when people played with him. Don't assume you know such things.
posted by waitingtoderail at 6:12 AM on April 20, 2010 [1 favorite]

You're not a parent, are you?

You know, I think this is a cheap shot. I am a parent, and I agree with Pracowity to some extent. I also think there is a quality of life issue for the child as well. Would you want to survive 20 years on pureed beef hearts?

I had a related AskMe last year.
posted by werkzeuger at 6:13 AM on April 20, 2010 [1 favorite]

i am so conflicted on this.

on the one hand, wow - gerber really stepped up and did an amazing thing in a time when we hear so much about "evil" corporations.

on the other hand - this is kind of like the whole right-to-die issue. what was this kid's qualify of life? my friend who is a hospice case manager deals with this kind of thing a lot - and it's not always older people. there are teenagers and 20somethings who get awful diseases and die a long lingering death. but the best things is not always to keep them alive. sometimes it's best to just let them die in a caring, peaceful manner.

i have an enormous amount of compassion and sympathy for the parents, but also a large amount of conflicted feelings about the whole thing.
posted by sio42 at 6:20 AM on April 20, 2010 [4 favorites]

I met him. I saw him smile when people played with him. Don't assume you know such things.

Have you met cows? animals have more going on than people sometimes assume...

I'm not trying to say that comparisons are really possible, and maybe in the end what matters most is how others feel about a creature, more than how much it is experiencing (unless it is fully self aware and can argue for its own right to live) but I can hardly see this as a beautiful story or anything. It is just sad all around, and the parent's interest in keeping him alive doesn't seem entirely compassionate. According to the WWN, "he suffered up to two dozen seizures a day, and asthma made every breath a struggle". I'm not convinced it was a triumph to extend that.
posted by mdn at 6:44 AM on April 20, 2010 [2 favorites]

I also think there is a quality of life issue for the child as well. (werkzeuger)

on the other hand - this is kind of like the whole right-to-die issue. what was this kid's qualify of life? (sio42)

Without directing this to the two people quoted above, rather using their comments as illustration, I think it is interesting that humanity can rant and rave when an insurance company denies a treatment to a person who is likely to die within weeks with or without the treatment, but yet get all het up about taking extraordinary measures to feed a child. Poor Raymond seems to have had some staggering physical disabilities and cognitive disabilities, and was not expected to live. However, as far as I can tell from the articles, with the proper food and care he was medically stable, i.e. was facing medical problems, but not terminal. I have spoken out strongly in favor of quality of life issues and consideration of right to die issues, but I am not sure it is consistent to apply those thoughts to a medically stable, non-terminally ill, disabled child.

I say this as someone who has made the decision to cease life-extending cancer treatment for my own infant child, including the withholding of nutrition via the cessation of total parenteral nutrition. I have the concepts of respect for quality of life firmly in hand. I have written articles about it, from a parents perspective in a pediatric cancer setting. This does not make me an expert, of course, especially because there are so many strong individual feelings in the arena of end of life. I respect others' views. But, I see a strong difference between starving a disabled, medically stable child and the kinds of decisions that are made when death to terminal illness is the concrete, absolute, short-term future.

toodleydoodley, I'm glad you brought this to the blue. Thank you!
posted by bunnycup at 6:59 AM on April 20, 2010 [8 favorites]

I have a lot of respect and admiration for all the actors here, but I must say that as a parent, if my son was in that condition, I would probably be looking for ways to compassionately end his life rather than prolong it. The basis of that feeling has little to do with other suffering children, though, and nothing at all to do with bovine sentience.

That said, I hope I never have to actually make that decision.

Also - 38 pounds? At 20? My son is 9 and weighs pretty close to twice that.
posted by bashos_frog at 7:13 AM on April 20, 2010 [1 favorite]

it is interesting that humanity can rant and rave when an insurance company denies a treatment to a person who is likely to die within weeks with or without the treatment, but yet get all het up about taking extraordinary measures to feed a child

Well, I probably wouldn't rant and rave as long as they provide palliative care in the case of a terminal diagnosis. But "extraordinary measures to feed a child" is a bit of a gloss; this was the output of an entire production line in a factory to keep alive a child whose life seemed to consist of rolling around on a mat, having several dozen seizures a day (likely a degenerative scenario in and of itself).

If I'm understanding you correctly, you're staking out an ethical position where terminal diagnoses entitles one (or one's guardians) to consider right-to-die issues, with anything else seemingly consigned a disability. As a parent who once had to contemplate bringing a severely disabled child into the world and chose not to, I think it's legitimate to look at quality-of-life outside of the terminal diagnoses scenario. I understand your reservations, because down that path could lie some truly horrible things. But considering the quality of life for a child like the gerber boy is a far cry from the wholesale extermination of the disabled, and a sound ethical framework can enforce that distance.
posted by werkzeuger at 7:36 AM on April 20, 2010 [4 favorites]

You know, I think this is a cheap shot.

First of all, I'm actually not a parent and I realized after I posted that I gave the impression that I am, and I didn't mean to, so sorry about that. And I am all for quality of life, and not selfishly prolonging someone's life if it consists of only agony and misery. On the other hand, I just can't see being able to end my child's life if I was with him day in and day out and saw bits of cognizance and happiness. We don't know the entirety of the circumstances.
posted by amro at 8:03 AM on April 20, 2010

werkzeuger, I am staking no position as to who may consider these issues.

But when you say "consider", as in whether an individual or a parent can "consider right-to-die issues" and that this family should have been engaged in "considering the quality of life for a child like" their son, I am not sure what you mean. I have no qualms about folks considering these issues, and as a parent who cared for a terminally ill child I can tell you that these parents probably spent endless hours considering their son's quality of life. Is your concern truly that you feel no one "considered" these issues? Or that you disagree with essentially the decision that was the outcome of the decision - to pursue extraordinary measures to feed their child?

I know it sounds like I am making much out of nothing, but I am doing so for a real (and gentle) reason. It's very easy to suggest people consider these issues, and much harder to act on them in real life. I can direct you to my own blog entries at the time we made the transition from curative to palliative care, and watching our daughter's decline from cancer. It's linked in my profile, if you want to read. I respect, wholeheartedly, that this is not a subject with which you are wholly unexperienced. I respect, wholeheartedly, the decision you made. I also respect others' decisions not to withhold care. I respect that not all "consideration" of the issue will result in withholding care.

I consider this especially important when there is no terminal illness, for various reasons. I'm not wholly comfortable flushing them out right now, but in a general terms I feel that a terminal illness will cause death and right-to-die issues are then essentially the management, control and palliative governance of an unavoidable end. Chronic, serious but-not-yet terminal illnesses may in many cases fall into the same category, and I respect that, of course.
posted by bunnycup at 8:14 AM on April 20, 2010 [1 favorite]

We're not bees.

I am! BUZZ BUZZ!
posted by infinitywaltz at 8:35 AM on April 20, 2010

I can't speak to any of the specifics the Dunns faced, though I am certainly an advocate of right-to-die and compassionate end-of-life care. I agree with bunnycup about his medical stability, in whatever form.

Individuals with disabilities can bring more to our lives than we might think. Studies show that herd animals who take the time to not only care for but adapt to the peculiarities of a disabled individual are more resilient and adaptable, making them a stronger group. Being a family member or friend of someone with a severe disability means that you will need to develop patience, compassion, flexibility, and a host of other skills, big and small -- everything from how to sleep soundly through noises at night to how to put in someone else's tampon. No, you might never have to do these things again, but they make us stronger, more complete people.

And if we're able to then adapt this knowledge in other ways, we can become innovators who help many more people than just those requiring direct care. Think of the benefits of universal design. Curb cuts for wheelchairs work just as well for strollers. Easy-to-open doors make it easy to carry in groceries or move furniture. Think about the space program: how the goal of a mission to the moon also led to the development of Tang, Velcro and innumerable other products that we use every day.

So as long as the family finds meaning and is able to continue supporting themselves, I agree with their decision. I can't say what I would do if faced with something similar. But when you compare one person's life to that of others who need support, remember that the example of caring for Raymond may have brought unquantifiable benefits to many people. I don't think it's wrong to take care of someone close to you more deeply than those far away. You do it because you know you can.
posted by Madamina at 9:46 AM on April 20, 2010

the cows providing the hearts that kept this kid alive had greater claim to sentience than this kid ever had and therefore are just as worthy of our moral consideration (if not more worthy)

What an appallingly STUPID thing to say. You should be embarrassed.
posted by five fresh fish at 10:18 AM on April 20, 2010 [1 favorite]

I can see light and shadow.

Some days, because one of my kids is also very ill, it seems to be mostly shadow, so thank you for this post, which was a really welcome bit of light.
posted by namasaya at 10:38 AM on April 20, 2010 [2 favorites]

What a great thing Gerber did for this family. It's nice to see a large business do something other than blindly follow the path of making more money for its shareholders (not that this action would not help with positive publicity).

I hate that metafilter threads like this always end in the bashing of mentally disabled people; it's one of the worst things about this site.
posted by fermezporte at 10:52 AM on April 20, 2010 [1 favorite]

What an appallingly STUPID thing to say. You should be embarrassed.

I'm not fond of the reaction either, especially since those cows were going to be slaughtered anyway. However, you're the one who made the Eraserhead joke.
posted by Burhanistan at 10:52 AM on April 20, 2010

bunnycup, thanks for clarifying. What I mean by "consider" is whether it would be more merciful to terminate such a pregnancy. I think every parent deserves to make a choice in such a matter, and I felt that some of the language in your original comment is the same used by those who would deny them that choice. I hope you can understand that's an issue I'm very sensitive to.

This is getting too personal for me and I'm bowing out of the thread.
posted by werkzeuger at 11:13 AM on April 20, 2010 [1 favorite]

werkzeuger, I recognize how personal this is for both of us, and that we have both faced aspects of this decision that very few parents are forced to navigate, and which have profoundly affected our thinking on these matters. Many parents, like me, who have had to face these decisions were not aware prior to birth that their children would be born with a disability or illness, or would suffer an accident or illness later in life that would result in severe, painful, and debilitating medical challenges. Other parents have had to face the unknowns prior to their child or childrens birth, and are put in the position of trying to forecast and predict events unknown. I don't think I take anything in my life more seriously than I take a commitment that we must have compassion and understanding for parents in these types of situations. These are very saddening and very personally affecting issues for both of us, and perhaps our own different experiences are hindering communication. I will bow out too.
posted by bunnycup at 11:23 AM on April 20, 2010 [1 favorite]

Thanks ToodleyDoodley. Quite a story.
posted by rahnefan at 11:25 AM on April 20, 2010

There is so much to like and admire about this post. Parents who loved their child, no matter how disabled and fragile. A company who did the right thing for the family.

Yes, there are quality of life issues for severely disabled people, and I'm sure that their families struggle with those choices every day. In this case, though, I get the impression that everyone was acting on a good impulse.

Sometimes the lengths that we are willing to go to in order to help one person, show the depth of our compassion.

I don't think that by denying this one damaged person, that somehow, other people could have benefitted. No matter how you do the math on that, I don't think it works that way.

I suggest that if you were moved and encouraged by this small story, that a small contribution to Unicef, may make you feel even better.
posted by Ruthless Bunny at 11:27 AM on April 20, 2010 [1 favorite]

big thanks also to amethysts who said something yesterday on the MeTa medical marijuana kid update that made me remember having read about this (Raymond Dunn), and to vorfeed and jessamyn who saw my first linkpile and said "that looks like an FPP."
posted by toodleydoodley at 1:34 PM on April 20, 2010 [1 favorite]

d'oh! Plutor! I meant Plutor! Thanks!
posted by toodleydoodley at 7:03 PM on April 20, 2010

I'm still skeptical about the need for a production line, and that there is not some DIY solution.

Let me give you an example. Two guys I know worked for a large chemical company. They were in charge of refining one particular chemical powder. The process involved spraying a liquid that would fall about 30 feet and dry in the air, and was collected at the bottom.

On their job they specified a 30 foot steel reinforced cement silo with a metal stair case, internal video monitors, and a monitoring station built on top.

Then they decided to go into business for themselves, and built a wooden scaffold covered with plastic tarps in one of their backyards. It cost less than .1% what they had specified previously.
posted by StickyCarpet at 11:52 AM on April 22, 2010

Then they decided to go into business for themselves, and built a wooden scaffold covered with plastic tarps in one of their backyards. It cost less than .1% what they had specified previously.
posted by StickyCarpet at 2:52 PM on April 22 [+] [!]

yes there is no difference in the need for a controlled environment between making some kind of unspecified air-dried powder and producing food for a profoundly delicate living human child with debilitating asthma and potentially fatal food allergies.
posted by toodleydoodley at 8:21 PM on April 22, 2010 [1 favorite]