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Thursday, June 16, 2011
High Hopes For Medical Informatics
One of the things that has been so frustrating in the long term about what happened to Daniel is that it appears not to be as rare as was once believed. Although we have no clearly defined indications of Long QT Syndrome, pathologists who analyzed the autopsy data, our family history of older members with arrhythmic disorders, and the exact occurances in the moments prior to Daniel's passing, have decided upon this diagnosis as a diagnosis of exclusion. After all, Long QT Syndrome is a functional disorder, not necessarily a structural one. This means not only that we have to make sense of, and live with the loss of our own youngest son, but we hear continually of other children who passed suddenly either of Long QT, Sudden Cardiac Death Syndrome, undiagnosed Wolff-Parkinson-White Syndrome, Brugada Syndrome, Dilated Cardiomyopathy, Viral Myocarditis, Sudden Unexplained Death Syndrome, Near Miss SIDS, Viral Cardiomyopathy, Spontaneous Ventricular Tachycardia, Torsade des Pointes, R on T phenomenon, Commotio Cordis, Sudden Arrhythmic Death Syndrome, Coxsackie B myocarditis, and others. The problem is, we are told that these are rare, and yet many of us know at least several families in which a child, young adult, or young parent have suddenly expired, and the family is told that the autopsy is inconclusive or one of these disorders is suspected. There are groups who are tallying the number of children, or teens or young adults who are victims of sudden cardiac death but there is no real consistency. Some statistics include babies, others do not. Some statistics include children over 12, others do not. There are children who die suddenly who are never autopsied who never become part of any of the sudden cardiac death statistics. In addition, where autopsies on children who died suddenly ARE done, there is often surprizing inconsistency. Some include toxicology screens, and others do not. Some include genetic studies looking for Long QT markers and others do not.
It is my hope that soon, medical informatics can help somewhat in this regard. Medical Informatics started badly. The Nazis made medical informatics a priority. They conducted experiments in which the LD50 for human beings was determined. (The LD50 is a determination of the lowest dose of a substance that would cause the death of 50% of the test subjects) The Nazis also used an extensive punch card system which aided them in a medical eugenics program. Since medical knowledge by the Nazis was used to advance a frightening agenda, we can see how many of us dislike the formation of medical databases of any kind and any location. If information on medical histories and genetics are misused, the public worries that a prospective employer could decide that their family history makes them a poor choice for a career position, or that their insurance company may decide that they do not wish to insure someone with a potentially expensive future medical problem as determined by family history. I do understand the reluctance here. However, there may be an advantage here. If we could enter all of the information for each child believed to have experienced a sudden death of uncertain etiology (cause), with all of the particulars, would we be able to data mine and obtain additional directions for study ? For example, if we learned perhaps that children who had prenatal arrhythmias, which disappeared upon birth and cord clamping, experienced sudden cardiac death as teens 30% more often than teens without prenatal arrhythmias, then we could alter current recommendations. Right now, babies with resolving prenatal arrhythmias receive no follow up whatsoever. If we had data which suggested they should, then perhaps we could formulate new guidelines. Daniel was one of those babies. We were told again and again that additional follow up after birth was unnecessary. Well maybe not ! Data mining through a medical informatics database could help us notice a wide range of associations and perhaps commonalities between the children who passed from Earth from these sudden death syndromes, and then perhaps we could intervene sufficiently to save more of them, perhaps even their own siblings, or nieces and nephews yet to be born. Perhaps expanded use of medical informatics is a good idea. Perhaps we could also do a better job of assessing the true incidence of sudden death in children and teens and identifying groups at risk who are as yet unidentified.
In the 1960s Hashimoto's thyroiditis was felt to be a rare disorder in which the body periodically attacked the thyroid gland, ultimately destroying it. By the 1990s, and certainly by 2000, it was recongized to be one of the chief thyroid diseases in North America. It wasn't rare at all ! Perhaps sudden cardiac death is not as rare as you and I have been told either.
Allison Krauss and John Waite "Missing You"
Yes, John Waite was the original artist.