La SIDS e il Dr Bruce Beckwith
La straordinaria umanità di uno scientist alla ricerca di una “semplice” definizione in grado di restituire conforto alle famiglie tormentate dalla morte di un bambino per SIDS
Non so in quale capitolo del blog inserire questa comunicazione. Un tipico esempio di “serendipity”… ovvero una lettura in cui finisci per caso. Stavo studiando il protocollo di follow-up per un bambino con sindrome di Beckwith-Wiedemann ed ho così “conosciuto” il dr Beckwith, che oltre ad aver definito la sindrome che prende il suo nome è il medico che ha identificato e studiato per primo la SIDS.Ho così conosciuto quanto il dr Beckwith, pur non essendo un clinico ma un patologo pediatra, desse grande importanza alla comunicazione empatica e accurata con i pazienti, in questo caso i genitori delle vittime di SIDS, innanzitutto per confortarle e riuscire a spiegare anche quando non sappiamo
Le parole di un genitore sul dr Beckwith
Ecco come ne parla in un articolo il genitore di un bambino morto di SIDSDoctor’s legacy of compassion endures — Puget Sound Business Journal
“For more than 20 years, nearly every King County parent who suffered the loss of an infant to SIDS received a call from Beckwith, a gentle voice explaining that their child had been a victim of SIDS, a disease entity neither predictable nor preventable, and that they were not responsible for the death.
The healing process began for those parents at that moment, although at the time Seattle was a virtual island of support in a national sea of ignorance. Elsewhere in the country, parents were subjected to suspicion, accusations and even arrest.”
Guarire dal dolore attingendo ad informazioni accurate
Ecco come nel 1983 (aggiornato nel 1996) in una riunione con i genitori di bambini morti di SIDS condivide lo stato delle conoscenze sulla SIDS. L’indirizzo delle sue ipotesi patogenetiche, l’attuale insuccesso nella identificazione di una causa. Cosa è e cosa non è la SIDS. L’imprevedibilità dell’evento. EtcCommonly Asked Questions About SIDS parte 1
Commonly Asked Questions About SIDS parte 2
“I think of SIDS, not as a disease, but as a manner of dying.
I have long believed that the answer to SIDS will come, not by looking at predisposing factors, but by working backwards from the moment of death.
I spent many years presenting evidence that suggests the mechanism of death may be a sudden internal obstruction of the upper airway, probably at the very end of a breath. The sleeping baby lets out air, and something closes down inside the throat that prevents the intake of the next breath.if the wrong message comes down from the brain, the throat may stay closed instead of opening. That wrong message isn’t necessarily a result of this baby being abnormal, but occurs in a normal baby whose brain is growing at a tremendously rapid pace.”
Definire la SIDS
Su un articolo di JAMA del 2003 il Dr. Beckwith sintetizza il susseguirsi di scoraggianti consensus per una definizione diagnostica condivisa della sindrome, prerequisito essenziale per una adeguata ricerca a livello mondiale.“Sudden infant death syndrome (SIDS) exemplifies the problems that can arise when a syndrome lacks adequate definitional criteria.
Current definitional criteria for this diagnosis leave pathologists free to apply this designation either too liberally or too restrictively.
When SIDS is diagnosed too restrictively or not at all, the family is often denied the benefits of the SIDS grief support system. Unwillingness to diagnose SIDS can also lead to inappropriate suspicion or blame directed toward parents or caregivers, including unfounded self-accusation.
No less unfortunate are some situations in which the SIDS diagnosis has been applied too liberally. Lethal genetic disorders and infanticide have been misdiagnosed as SIDS.”
Second International Conference on Causes of Sudden Death in Infants — Seattle, Washington, 1969: “The sudden death of any infant or young child, which is unexpected by history, and in which a thorough post-mortem examination fails to demonstrate an adequate cause for death.”
“I was certain that a more specific definition would soon emerge. How wrong I was! For 20 years this definition remained unchanged, and even now has many proponents.”
National Institute of Child Health and Human Development (NICHD), 1989 “I was disappointed that the version drafted by the organizers rejected the concept of a stratified diagnostic approach and proposed only slight revision of the 1969 definition. This revised version, which will be termed the 1989 definition, was published in 1991: <The sudden death of an infant under one year of age, which remains unexplained after a thorough case investigation, including performance of a complete autopsy, examination of the death scene, and review of the clinical history.>”
SIDS International meeting. Sidney 1992 “At a final session of that meeting, before a smaller and less diverse audience, I presented a modified version of the panel report, replacing the term typical with Category I and atypical with Category II. I also suggested a third category, intended for epidemiological purposes only, in countries or jurisdictions where autopsies were difficult or impossible to obtain”
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