This Day, Once Again

       

Coming soon........but not today.

    Once again, I am sitting on this dark day.  This morning, it is four years ago today, that Daniel got up in the morning, got ready to go Christmas shopping, ate a bowl of cornflakes, and then collapsed and died in the bathroom just minutes later.   Immediate CPR did nothing.  Two epinephrine injections did nothing.  The AED the sheriff's office brought did nothing. The helicopter from the major medical center did everything, to no avail.  I still cannot fully believe, even four years later that God can call and reassign us in just a second.   I guess I always knew God could do this, but I had never seen it, in this way, as a registered nurse, or as a human being.
                Since then,  our family has struggled to make sense of the life which remains. Sometimes we have done very well, recognizing and accepting that Daniel was an incredible gift from God to all of us, and accepting God's calling him home with a clean autopsy here on Earth.   Other times, we give way to the very human anger and deep sorrow that losing our youngest family member with no notice whatsoever brings.
                 Grief is a very strange thing.  In some ways, Daniel's departure from Earth seems like a very long time ago. So much has changed here since.  Two of our children graduated from universities, one bought a house, and we brought another family member home through adoption, as Daniel has always wanted us to do.  Other times, his loss from Earth seems so recent, so acute, and so focal.

Sunrise this week over our farm   (Photo: David Krehbiel   copyright 2012)

 

                I am also so struck by how different this day is year to year.  The year Daniel departed, the leaves were just beginning to turn and autumn was not well advanced. Other years, this one included, the empty winter is sternly upon us, as if our farm itself, knows what day this is, and that it should grieve.
                In this life, we largely make our own joys where we find them, and I am determined to make what the bereaved mother's groups call an "angel-versary" count.   This year, very shortly, a book sharing some of our experience of Daniel's life, his loss, and our survival will be released worldwide.   It had been my intent to have it released today, but book publishing lacks the scientific precision of rocket science, and so it should be forthcoming very very shortly.  Besides, I am starting to realize that there is a plan to this life, and that most everything does have a reason, or at least, a rhyme.
                Please pray for our family as even now, four years after the loss of our youngest member, we each process the loss in a different way, and on different timelines and speeds.  Thanks for reading.

High Hopes For Medical Informatics

computer mainframes


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.