Some weeks ago, I wrote posts discussing issues
about the death of Maxim Kuzmin, a preschool child adopted from Russia and
found dead in the back yard by his adoptive mother (http://childmyths.blogspot.com/2013/03/the-investigation-of-death-of-maxim.html;
http://childmyths.blogspot.com/2012/03/unanswered-questions-about-death-of.html
; http://childmyths.blogspot.com/2013/more-on-death-of-maxim-kuzmin-shatto.html).
In these posts, I stressed the possible similarities between Maxim’s death and
the deaths of a number of other children adopted both from abroad and in the
United States. My concern is about the need to compare these fatalities, with
the goal of identifying dangerous situations in adoptive families and
preventing further tragedies.
Recently, however, one or more “Anonymous” readers
have advised me that I should not be doing this. One indicated that Maxim’s
adoptive mother was terribly distressed by what I had said, and although I can
sympathize with objections to public discussion of private matters, I don’t
think it’s reasonable or even possible to stop discussion when something so
important to all of us has occurred. A second letter named three people who
according to the anonymous writer had lied about Maxim’s death. I declined to
post this comment, in part because I had no idea whether this was correct, and
also in part because Anonymous was declining responsibility for the statement
and leaving it to me to be sued for defamation as the one who posted the
material.
Yesterday, an Anonymous sent this comment:
“Ma’am, I will give thought to your increasingly
advanced age and warn you if you persist in believing everything you read in
the media, you may find yourself out of a job or worse your university slammed
into the media in a very large lawsuit being prepared based on your accusations
or as you like to call it discussions. You need to take into account that some
of the things you have read were written by people who have since lost their
jobs, are being sued, or are in the process of losing their jobs over ethics
violations, coercion, entrapment, and just plain lying to make the story
better. Repeating it as if it were true to begin with just makes you look
demented.”
Now, of course I have no idea who Anonymous actually
is. I had a guess, but everything in this message was spelled correctly, which
is not characteristic of the person I was thinking about. On the other hand,
that person has friends, and a couple of them are in Texas, and all of the group
are taking an interest in Russian child welfare affairs just now. That person
also likes to threaten lawsuits and even bring them (although his attorney quit
on him on the last occasion I know of).
Hmm, the more I think of it, the more that phrase “slammed into the
media” makes me think of this psychothreatener’s idiosyncratic writing style. The
sleazy personal remarks are also characteristic of that person. But here’s the
peculiar thing: unless someone was involved in Maxim’s adoption or treatment,
how could any of them have legal standing to bring a lawsuit claiming
defamation-- even if I had said anything
defamatory, which I have not? And,
unless there is far more to this matter than meets the eye, how could they get
Mr. and Mrs. Shatto to do so?
My purpose in discussing Maxim’s death was to work
toward bringing together information about a group of child deaths that appear similar
in a number of ways. Creating a list of risk factors based on the similarities
of such cases could serve to alert adoptive parents and adoption caseworkers to
potential problems and thus possibly to prevent deaths and injuries. One such
factor may be the diagnosis of Reactive Attachment Disorder coupled with
misunderstanding of the nature of this disorder. Unfortunately, there is
presently no way to bring together information about these cases unless local
reports are picked up by journalists and given wider coverage. When this
happens, the information that is provided is often limited in a way congruent
with popular belief patterns, as indeed are investigations.
I want to propose a method of investigating these
cases that might be called the “care autopsy”. I base this concept on the “psychological
autopsy” used both to identify cases of suicide and to implement research into
causes of suicide. A “care autopsy” would trace medical care events;
prescription, over-the-counter purchase, and administration of drugs; diet and
eating habits; accidental and intentional self-injury; disciplinary practices;
a list of all caregivers and time spent with each; sleeping and bed-time
practices; toileting and toilet-training events; and parental concerns as well
as physical and mental health. These data, collected for the several months
preceding the death, would be displayed in calendar form, allowing a reader to
note whether injuries or illness regularly followed events like punishment or
like the presence of a particular caregiver.
Physicians who are involved in the care of young
adopted children can be the best sources of information about causes of death
or injury, but to be good sources they must make themselves fully aware of a
child’s care experiences—and to do this before a “care autopsy” is necessary.
One important responsibility when dealing with a poorly nourished child would
be to maintain detailed height and weight charts tracing the child’s growth at
weekly intervals, and using that growth trajectory to advise parents on appropriate
feeding practices such as offering frequent small meals or substituting
nutritionally-equivalent liked foods for disliked ones. Although the best
person to offer such advice might be a highly-trained specialist, a
pediatrician or pediatric nurse-practitioner will probably be the most likely
good adviser an adoptive family can access. If a child dies without anyone
having taken this role in his or her care, our “care autopsy” will say so and
give us a possible reason why the child did not do well in the adoptive family.
If someone has taken this role, the information they can provide may help
pinpoint what factors contributed to the death.
I do not write about the Maxim Kuzmin case, or about
any other similar cases, because I want to hassle families who have experienced
tragedies. I do so because I want to prevent more tragedies from occurring. I
believe systematic investigation by “care autopsy” could help in prevention.
Silence about these issues will not do so.
;
I wonder if a care autopsy could be standardized, perhaps even with a point system like the apgar scoring. This is something that Atul Gawande, MD, promotes in his books "Better" and "Complications."
ReplyDeleteI would like to see the care autopsy take into account the guidance - good, bad, or lacking – of social services workers and therapists. The quality could reflect the evidence basis of the parenting method, therapy, etc.
I think it might be standardizable, but way way down the line, following a good deal of empirical work-- and it would have to be different for different age groups. I was originally thinking in terms of techniques like the NCAST feeding assessment, where there is a list of different observable events that all need to be taken into account. The point is really to provide insight into what's going on, rather than to say whether a pattern is acceptable or not.
DeleteParents' sources of information and non-medical treatments would certainly be important additions to such an assessment.