ALSO TODAY:
Table Talk - - - - - - - - - -
SIDS PACKAGE:
1. New controversy over SIDS 2. Signs of abuse 3. There is nothing new here - - - - - - - - - -
YESTERDAY:
Spice of life Wild things - - - - - - - - - -
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What exactly were your findings? I essentially conclude what some people have already suspected: We're missing the diagnosis because we're not considering abuse. If you do not consider it, you will miss it, and if you miss it, children will be hurt or possibly die. In the past 10 to 20 years, probably 5 to 10 percent of what was diagnosed as SIDS was really infanticide. When should physicians be suspicious? There are many cases in which infanticide occurs after repeated previous episodes of abuse, suffocation. One SIDS in a family is just that. Two SIDS or more in a given family is suspicious. Does it mean they're guilty of murder? Absolutely not. It means one should be suspicious or should consider the idea of abuse and have it further evaluated or investigated. What we want to avoid is children who had repeated near-death events before they finally died and then they were misdiagnosed as SIDS. What kind of abuse can masquerade as a near-miss SIDS or SIDS? Is it just smothering? Smothering is essentially the one. With any kind of violent physical abuse, there are some signs that aren't always obvious to the naked eye. But when a detailed physical exam is carried out, those things can be picked up. What makes [spotting infanticide] so difficult is that the smothering of an infant with a pillow can be done and show absolutely no signs whatsoever. A carefully smothered infant could appear exactly as a SIDS in an autopsy. Were doctors being negligent or was misdiagnosis an easy mistake that can happen to anyone? The million-dollar question is, what were these physicians trying to hide? Were they totally incompetent or were they totally naive? Or did they know about the possibility of abuse and suppress it because they had other reasons for not wanting to consider? And that's tough to say. It's possible that it was hard for them to conceive of infanticide or abuse and therefore it was never considered. Or they considered it but errantly thought, "Well, we can't prove it so let's not go there. Let's not totally upset parents who might be innocent." But that's wrong, because if you suspect abuse, you are obligated by law to call it in. As physicians, we're not expected to prove it, we're just expected to report our suspicions by law. Or that they considered it but were maybe afraid that if they irritated some parents, the parents would go back and tell the pediatricians who referred them and then the pediatricians would then stop referring patients, I don't know. Without patients, without referrals from outlying physicians, they had no data. Without data, you certainly can't publish. I have no evidence to support that, but I must admit that those are some of the things that have crossed my mind and other people's minds.
In "The Death of Innocents," Richard Firstman and Jamie Talan write about one baby at Massachusetts General who "had a life-threatening event in the hospital parking lot just minutes after discharge." Do you think the attending physicians were responsible? Overlooking suspicious signs? You think, geez, if it's so obvious to me and others in this country, these signs of symptoms should spark an idea in someone's mind that they should consider abuse. What could be the reason that they didn't? And I believe, in the vast majority of cases, that it's just so difficult for people to consider such an unthinkable act. Especially when you're standing there talking to these people and they seem like the perfect parents. They interact very well with the staff, they're very good at what they do. So it's just difficult to imagine that this person, once everyone's back is turned, wouldn't think twice about putting his or her hand over a child's mouth until the baby became unconscious or died. What would these parents say when they brought their children in after they had stopped breathing? What kind of reasons would they give? That the baby was asleep and they went to check on it and it was having difficulty breathing, or it was not breathing so they successfully resuscitated the baby, or while the baby was in the car seat or in their arms, the baby suddenly stopped breathing or turned blue and they were able to do chest compressions. Some of them would just stimulate them vigorously, pinch the baby. All sorts of different means and methods to "resuscitate" the baby. At home, some of them would have three or four or more events in a day. And then, usually, by the time they got to the hospital, everything was fine. They would come to the hospital, be admitted, spend anywhere from a couple days to a couple of weeks, even a couple months in the hospital, and not have any events. And then on the day of discharge or months after, the baby would suddenly start having these events again. Do you think that this oversight or masking of child abuse cases as near-miss SIDS or SIDS occurred all over the country, not just at Massachusetts General? I could only talk about the patient population that I studied, but I'm also very familiar with other cases in the country and around the world where prolonged apnea or other things have been suspected for a long time. Finally, somebody said, "Let's videotape this kid surreptitiously," and sure enough, in a strikingly large number of cases, they videotaped the parents, usually the mother, although there are currently two or three reports of fathers committing it and one report of a grandmother being videotaped. And when they catch a mom or dad suffocating their child on videotape and then confront them with that evidence, it's very common for them to say, "Yes, I did it." And they often confess, "Those other two children of mine who died unexpectedly, I suffocated them too." But hopefully in the future, with reports like mine and that of Dr. Southall, who videotaped 39 mothers or parents suffocating their children, people's awareness will be heightened. Phipps Cohe from the National SIDS Alliance says that it's far more common for SIDS parents to be accused of infanticide than for babies to be misdiagnosed. That may be true. I don't recall seeing any data to suggest or support that theory, but it wouldn't surprise me. And because a vast majority of babies less than 12 months of age who die unexpectedly are [victims of] SIDS, I think we have to assume the best in people but still ask the necessary questions in a gentle and sensitive way. Because I would suspect that the parent who has lost a child unexpectedly and catastrophically would also be concerned about babies that are potentially being repeatedly abused and even killed by murderous parents. Do you think that your research has any shortcomings, especially since you weren't actually there to observe some of the babies? Absolutely. My research has several limitations that are very clear. It's retrospective, so I was just going back through the medical records looking for documented concerns. I was looking back in time, I wasn't looking forward. What if you're wrong? Is it important to investigate these cases even if some innocent parents are wrongfully accused? My research doesn't conclude that all these cases that I reviewed should now be under formal investigation. The last thing that I'm trying to do is incite a witch hunt. But I think it would be interesting to go back to some of these families where there were three, four, five SIDS in one family and maybe ask, gently, some more questions -- certainly more than what was asked when they were initially being evaluated. What are your recommendations? If it's not necessarily to investigate these people, do you want the cases to be closed, to move on and look toward the future? I have mixed emotions about that. I want [these findings] to heighten people's awareness. I want physicians to look out for these types of risk factors in their patients and if they see them, consider them and then report them. And with the same vigor that we rule out life-threatening infections and rule out metabolic disorders and rule out head trauma with CP scans and rule out seizure disorders, we should also be thinking about at least the possibility of abuse. But then the other part of me, as a parent and a physician who is taking care of children who, I strongly suspect, were being abused and repeatedly suffocated and because it wasn't properly or more adequately investigated -- maybe it would take some criminal investigations in order to right some wrongs. But do you want the proper authorities to look into this? I can understand why some people say please look back, look into them. Because if some of those children were murdered, then clearly their murderers should be brought to justice. You're asking a physician about justice, and we're in the business of protecting children. So what we try to do is protect children, and in doing so, report our suspicions of abuse and then assist other services and other disciplines in investigating and further evaluating. Do you think that doctors are more suspicious now? Cohe says times have changed, that these kinds of cases are more thoroughly investigated.
I think times are changing. I think that there are fewer and fewer misdiagnoses. I think that it's incredibly important because for years the data on the children who were actually murdered was incorporated into true SIDS databases and thereby polluted good research. And I think that that's been happening for a long time. Cohe said all this media focus for this small number of cases, especially the Hoyt case, and a minute percentage of misdiagnoses can take attention away from risk-reduction programs that save lives. What do you think of that? I think it would be ethically, legally and morally wrong to not heighten
people's awareness and identify these risk factors and hopefully find and
save children's lives, just on the basis that some parents might be asked
some difficult questions at a sensitive time. I do not think
that it's taking away from the risk reduction programs. I think it's
important to get both messages out. And each time that infanticide or suffocation presented as
repeated near-death events gets attention, I think that
that's a great time to reinforce the fact that the vast majority of SIDS is just that -- SIDS. It's yet another vehicle to get people's attention about why or how infants
can die in this country.
Discuss the controversy over Sudden Infant Death Syndrome in Table Talk. |
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