Tuesday, February 6, 2007

ParentingTrauma Revisited

The sky’s clear over Atlanta this afternoon, and as I land, I’m wondering how far Birmingham and Montgomery are from the Atlanta airport: nearly equidistant at about 150 miles, according to the mapping/gps software on my laptop. I wonder if I might ever take the time to visit some friends thereabouts, if they were receptive.

The sun’s down by the time I take off for Burlington, Vermont, where I understand it’s much colder. I’ll be taking the ferry across Lake Champlain tonight, and sleeping in New York. I’ll drive along Cumberland Bay, which always makes me think of my then three to five-year-old son sitting on my lap, watching “Shining Time Station”, while someone was singing about “Cumberland Downs.” Memories of my children always seem kind’ve sad, these days. I miss the times when my son was small enough to sit on my lap (he towers over me, these days). I love him just as much now, but you get to be closer to them when they’re younger. My daughter is much more petite, and almost fits on my lap still at 13. But she’s growing up, and the times of watching television with my arm cradling around her are about over.

When my children were young, I was a much more avid sports fan than I am now. It was the era of John Stockton, Karl Malone and Jeff Hornacek, and I watched as many Jazz games as I could catch. Rick Majerus had come to the University of Utah, and quickly built a basketball dynasty, of sorts. During my second year of graduate school, the Jazz were looking particularly hot, and I had some reason to hope this might be the year they finally reached the championship. But I had a lot going on that year – I was still working a lot (medical education, mostly), the coursework during that second year was taxing, and I had a half-time internship at the University Counseling Center competing with all of my other obligations. Plus, my daughter was born that year. I didn’t have a lot of time to watch basketball.

We’d been trying to conceive for some time, and had finally graduated from Clomid to Metrodin – a significant escalation in the fertility follies, courtesy a new specialist; we joked my son was a gift from God (the odds against that pregnancy are pretty staggering), while my daughter was a (pricey) gift of modern medical science. From the time of her birth, though, her health was a little shaky (and still is). Her mother had been unable to breastfeed, and she had such horrid constipation on milk-based formula that we thought we’d try soy. The result was several months of diarrhea, and she wasn’t gaining weight like she should’ve. Talking it over with her pediatrician, we decided to switch back to a milk-based formula and give it another go.

There was a basketball game on that night we were going to change formulas again – I think we were playing the Rockets. I don’t remember with certainty, but what I do remember is the game went into triple-overtime. This turned out to be significant – I told my wife I’d go to the store and pick up some Similac after the game, but the game didn’t end until nearly midnight. My daughter had already had her last feeding and gone to bed. I brought a can home, and my aggravated wife said she’d make the switch in the morning.

My daughter was five months old at the time. She’d never had horrid colic like my son and was sleeping fairly well, though she’d wake up around 5 am. We’d make her a bottle, but were able to get her back down for a couple of hours with the assistance of a marvelous new invention: the battery-powered baby swing. When I went to work that morning, I didn’t think twice when I saw her asleep, rocking in her swing, because that’s what I saw every morning when I went to work. Her mom was nursing a cold. She was grateful for whatever extra sleep she could get.

I was working at the VA that day, and got a call from my wife at about 11:00 am. She’d been awakened by a phone call, and was puzzled our daughter hadn’t gotten fussy while she was talking. When she went to check on her, she was still in the swing, but her color had gone gray and she was horrified to find her only minimally responsive. When her mom picked her up, she found my daughter covered with a diarrhea of a peculiar character – orange jelly (which I learned soon thereafter is a grave symptom, in an infant). I told her to take her immediately to the doctor, but when she did, the doctor directed her immediately to the emergency room at the nearby children’s hospital; she didn’t dare wait for an ambulance. I met them there.

The immediate concern was an intestinal torsion (a section of bowel loops, crimping off both ends and cutting off blood supply - the bowel becomes necrotic very quickly), and an abdominal X-ray showed her bowels had shut down completely. They were able to revive her with oxygen, thankfully, though she was obviously in acute distress. Her mother was unable to tolerate the trauma, so I was the one holding my daughter’s hands during the medical tests that followed (the upper and lower GI studies being the most invasive), rocking her, singing to her, trying to comfort her.

By the time the lower GI was conducted, peristalsis had resumed (no torsion), which was a tremendous relief. Nobody could tell us what had happened, however. They performed a spinal tap to check for meningitis (negative). The ICU physician, a rather large and overwhelming man, was convinced she’d experienced what he called a “dive reflex” event and gone into shock (when some sea animals dive, their bodies expel the blood from, and shut down, their bowel). The gastroenterologists scoffed. We kept telling people about the change in formula, but nobody (including the gastroenterologists) gave any credence to the idea such a catastrophic medical event could’ve been due to an allergy.

They kept her in ICU for five days, without incident, and then on the medical unit for two more. Physicians consistently grilled my wife and I. They took samples of our formula and had them analyzed. Eventually, they decided she should just go home, but just to be on the safe side, they decided to challenge her with some Similac in the hospital before we took her. They gave her two teaspoons. In the course of about twenty minutes, I watched my daughter slip into unconsciousness again.

What I didn’t realize at the time, BTW, is that medical staff had become suspicious of us. It wasn’t until years later that I realized some of the questioning, and probably the lab analysis of our formula, were conducted not only as an investigation of my daughter’s condition, but also as the initial steps in an investigation of her parents. Someone was concerned about the possibility of Munchausen’s by proxy (in a stroke of amazing coincidence, I got some partial verification of this from the spouse of one of the treating physicians, who started in the same graduate program several years later). When we took her to an allergist, she was appalled by the amount of formula they used in their challenge. My take: they wanted to be absolutely sure, before they began lowering the boom on us.

My daughter had a milk-protein allergy, which (as is usually the case, apparently) also meant cross-reactivity to eggs, nuts and soy. We made her baby food ourselves, in the blender. She eventually outgrew the milk, egg and soy allergy, but we have reason to fear challenging her on nuts. Her allergist indicated this is the one she’d be least likely to outgrow, and when she was about eight, she ate some honey-nut cheerios at a neighbors house; her mouth and throat broke out in a mass of little sores and blisters. Also, while she was getting her abdominal X-ray during that crisis, they brought a young child into the same treatment room in anaphylaxis. She’d been in the waiting area for some unrelated reason, and a stranger had given her one of their peanut M&M’s. Our observation of that child’s distress left and the difficulty they had reviving her left quite an impression.

From a more detached perspective, the experience was instructive on a number of levels. I became involved in some cases of alleged Munchausen’s by Proxy several years later, and I soon realized the bullet I’d dodged not only so far as my daughter’s medical crisis was concerned, but also in the trauma of a hospital-instigated CPS investigation.

As I became more involved in cases of child abuse and neglect, I had ample reason (and opportunity) to reflect on (and observe) the nature and impact of abuse on children. If it were only the physical injury the child suffered, one would expect that many of the children from that hospital would be psychologically damaged by the experience of their medical treatment. Instead, what you find is children who are sometimes surprisingly well-adjusted who have experienced repetitive injury and medical trauma, while others who experience abuse-related injury of much less significance are often quite scarred. Medical treatment can be horribly invasive – my daughter’s certainly was. That it takes place in the larger context of caretaking seems to make all the difference.

A friend read my post the other day, in which I contrasted my daughter’s medical studies that day and sexual abuse, and asked about it – why I’d make such a contrast, or where such a thought had come from. I don’t know that I’ll ever really get past the trauma of that experience, but I’m not really sure I want to. Each day since has been a rare and precious gift.

I still find it staggering that I almost certainly owe her life to my appreciation of a basketball team, and a game that took a triple-overtime for the Jazz to win. There’s a lesson in there somewhere, I’m sure – something about the importance of caring for the caretaker, or something, but I’m not gifted enough to articulate it.


rundeep said...

Wow. What a scary, interesting powerful story. We owe more in life to coincidence than planning, I think. Lucky for you all.

Keifus said...

My little brother was accident prone when he was small. One winter, he didn't quite clear the barbed wire fence near the bottom of the sledding hill and tore open his scalp. Another year, he was playing around on a family hike, and he careened headfirst into a stump, taking another chunk of skin off his noggin. Still another time, he broke his wrist jumping off a swing. I remember the first two: and although I was young, I clearly remember my parents' concern after getting the (entirely inappropriate, I can verify) third degree by the emergency staff.

In the Massachusetts news this week is parts, are parents charged with homicide of their 4-year-old girl. I hate news like this of course: it's depressing, it's exploitive, and it's predictably judgemental in a way to guarantee ratings. I don't know if this case was Munchausen's by proxy, though it sounds like it given the description I (just) read. Either way it sounds like more of a case of horribly unfit parenting than outright murder (not that it matters to the poor little girl).


I count myself lucky to have daughters. There's nothing like the bond between Daddy and his little girl, I'm finding. I'm going to be disappointed when they're too big for little-kid affection, but I hope we keep the bond.

I enjoy reading these pieces of yours.

TenaciousK said...

Rundeep and Keifus: thanks for the comments. I always feel a little self-indulgent when I write about my family.

The state of Utah was sued by the Center for Youth Law in San Francisco - one of several states they took to court over the treatment of children in fostercare. As part of the settlement, Utah made a whole raft of concessions. One was that every child in state's custody would receive a mental health evaluation within 30 days of being taken into state's custody (Utah had been doing a poor job of seeing to the mental health treatment needs of kids in foster care).

I was one of the first team of people hired in the State to conduct those evaluations, and that's pretty much all I did for 2 1/2 years. I saw about a third of the children coming into state's custody in the most populous county in the state, as well as two adjoining counties. It put me in a unique position, seeing that many kids and coming into contact with that many caseworkers. I was in court routinely as well.

So reading that link was like old times, Keifus. No, that's not a case of Munchausen's by proxy. Munchausen's by proxy involves a parent (sometimes with a colluding parent) coercing their child into being ill. Often this involves something overt the parent is doing. [Remember that scene in the Sixth Sense, where the kid got her mom poisoning her soup on videotape?] But there've also been some fascinating (and sort of depressing, frankly) case studies of kids accommodating their parents without assistance, to a sort of shocking level.

Muchausen's (not by proxy) is supposed to be distinct from hysterical illness. In the latter case, the person is becoming ill (without conscious awareness) due to somaticized stress, and in the former, they become intentionally ill, in large part because it fills some histrionic need for attention. In the "by proxy" case, it's still the parent's need for attention, but the child has been co-opted into the role as the sick one. The whole issue is terribly controversial, as you might imagine. I have reason to suspect that there may be occasions when Munchausen’s more closely resembles hysterical illness, and the parent is not consciously aware of what they are doing. There’s undoubtedly a big gray area between the intentional and the unintentional, though bringing that up muddies an issue people tend to prefer clear-cut.

Keifus, the little girl in the story you linked was diagnosed with bipolar disorder at the tender age of 2 ½. The diagnosis itself at this inappropriate age probably doesn’t reflect Munchausen’s on the parents’ part, or malpractice on the physician’s part, as much as a common pragmatism in medical practice.

One of the primary factors involved in the explosion of bipolar disorder in the past 15 or so years (especially pediatric bipolar disorder) is the development of the atypical antipsychotic drugs (many of whom have indication for bipolar disorder, and the rest are seeking it, I’m sure). These are drugs like Zyprexa, Risperdal, Seroquel, Geodon and Abilify. The pediatrician in this case undoubtedly considered this little girl to have a pervasive developmental disorder (Asperger’s, or worse), but made the bipolar diagnosis in order to justify the med they wanted to use (I think it was Seroquel – I’d have to go back and look). For that much polypharmacy to be going on in a child that small, however (prescribed Clonidine also probably indicates an ADHD diagnosis – probably), there was certainly something going on with this kid.

That the parents have previously lost custody of a child suggests what was going on was environmental, and this is certainly the interpretation you’ll see the press jumping all over (it being all inflammatory and all). While that’s certainly possible, it’s also very possible that what you are seeing is two parents of very limited intellect and skill, who’ve already had noxious involvement with child welfare, a criminal lack of supportive services for this and similar families, a pediatrician who was trying to help, and a system eager to scapegoat quickly and with vehemence, lest the spotlight fall too quickly back on themselves.

This pediatrician may end up with horrid consequences – loss of license, perhaps criminal prosecution, inability to obtain malpractice insurance, and the like: or not. If there was a protective supervision caseworker involved, they’ll probably end up losing their job. This couple will probably end up losing custody of their kids, who’ll be subjected to the tender mercies of the state foster care and adoptive services – an emotional woodchipper, if I might be permitted a Fargo-esque analogy. It depresses me that the people most likely to have the axe fall on them (with the exception of the parents) are the people who are actually trying to do something with the difficult population of people nobody else wants to deal with (maybe I’ll start addressing them as PNEWTDW – people nobody else wants to deal with).

In a country of a more socialist persuasion, this sort of thing is much less likely to happen. Respite services alone might have prevented this tragedy, though some in-home mental health and adaptive skills work would’ve done a lot better. Utah used to offer a lot more of that sort of thing, after they got sued. There was a huge influx of cash into the system, and suddenly, things were working a lot more like they were supposed to. But then the monitoring of the settlement agreement was discontinued, budgets were slashed, within six months average caseloads for foster care workers were what they’d been before, and things in the overall system had regressed to the point things were almost (but not quite), as bad as they were before.

Within two years, the format for the evaluation I’d developed, which had been adopted as the standard for the region, was scaled back (too expensive for a professional to spend all that time on one kid). Now, kids are subjected to a screening that’s more insulting than informative, so caseworkers can check a box, and everybody can pretend they’re being helpful without actually doing anything (much).

You’re unlikely to see much of that on the news though, Keifus, because it’s less likely to fill the desire for emotional titillation of an apparently desperately bored and ignorant public, and risks offending the wrong sorts of people.

I wonder what someone like Ioz would have to say about a situation like this. For some reason, you never seem to find Libertarians working in social services (or with people who are being served by state social services).

Why do you suppose that is?

rundeep said...

Dear Lord, what a grim and sad story. TK your explanations sound utterly plausible. It does sound, even on the surface, more like a bunch of negligent folks than cold-hearted killers.

As to Munchausen's by proxy, as I recall for a while it was the preferred explanation for crib deaths, after there was a case of a family with 6 crib deaths (I think from PA, actually) in which the mother was eventually charged, and I think, confessed.

I am informed by my friends at, of all places, the Veterinary Hospital of the University of Pennsylvania, that they see Munchausen's by proxy with pets quite a bit. I won't venture an opinion as to whether it's better or worse.

By the way, I envy you both as girl-dads (and you both sound excellent at it, by the by). Girl moms have terrific closeness with the offspring (assuming all goes well) but those teenage years involve a lot more viciousness towards us as the need to separate identities advances. I'm hoping I'm spared the worst of that, somehow, but the little glimpses already appear.

Keifus said...

Indeed, I defer to the expert. Thanks for filling me in.

I think libertarians like IOZ would argue that the state monitoring and meddling in families works more (potential) harm than does the occasional anecdotal tragedy (dealing instead with as-yet hypothetical tragedies, but vigilence against authority is really important too). Libertarianism in general has problems with children. Can't quite grant them the agency of adults, can't quite call them owned like cattle, though the hard cases lean, I think, to the latter.

Various of my in-laws have worked for family services, the sorts that went into the homes and repossessed children for the state. (Odd candidates for the job, but never mind that.) It was rough on them, I think, as it would be on anyone.

You don't want to judge families. You don't want the state to be in the business of making those decisions. But sometimes it's the least bad consequence.

rundeep: got through what (I think) was the last of a half-decade of weddings this summer. every time the father danced with the bride, I got misty.


rundeep said...

You mean the libertarian as social worker question wasn't rhetorical? Sheesh. Yeah, what keifus said. To the extent they acknowledge a real need for such services, they would prefer they be carried out on a daily basis by liberal fascists and then overseen by libertarians. Balance, you know, in all things.