Porter (September 2007)

What Happened on March 21, 2008?

It has been hard to accept that such a young and health boy such as Porter would die at such a early age. There just is no reason for such a tragedy. Many people have asked us "what happened"? They are often just as puzzled as we are as to how life could end so early and so abruptly. We have decided to add this section to Porter's memorial website to share what we know. It continues to be difficult to wrap our heads around what has happened and we realize that telling people of Porter's passing is not always enough.

We cannot express how lucky we do feel for having the week with Porter that we did before he died. We often find ourselves saying we could not have planned that week better if we had known. Porter was moving to the new "Two's classroom" and was having difficulties sleeping through the night. We thought it would be best to have more "mom and dad" time while he made the adjustment. Mike got permission to work five eight-hour shifts and be home by 4pm each day. Becky arranged her schedule so that she went to work at 10am each morning. This allowed a lot of time in the morning to sleep in, eat breakfast together, watch Sesame street and play with toys before heading off to daycare. Mike and Porter went on a bike ride to the park on Monday, cleaned the garage together on Tuesday. On Wednesday Becky took the afternoon off because of her sinus infection and made dinner for both Mike and Porter. We all did a bit of playing and spending time together. On Thursday Mike said Porter was running a bit of a fever and the two took a nap. Afterwards, Mike gave Porter some Motrin and he was up and running around as usual when Becky got home. We let him stay up an hour later because of his late nap, and the three of us played cars, blocks, and ate some goldfish crackers. We both gave Porter a bath and Becky read him three of his favorite stories instead of just one or two. Porter was happy as a clam. We both gave Porter a kiss goodnight and told him how much we loved him. While it is hard to manage without our precious Porter we feel so fortunate to have had such a perfect last week with him.

*Updated 3/4/11* Click Here For the Whole Story

*****Please be advised that this story is not for the faint of heart. It is highly emotional and contains very descriptive information that may be disturbing for some readers*****

Sudden Unexplained Death in Childhood (SUDC) Updated 3/4/11*

A year after Porter's death we decided to participate in the Sudden Unexplained Death in Childhood (SUDC) research program. SUDC is defined as the sudden and unexpected death of child over the age of twelve months, which remains unexplained after a thorough case investigation is conducted.Porter's death was initially ruled a sudden and unexpected death as a direct result of influenza B, however, this cause of death never really felt correct to either of us. We read stories online about flu deaths in children and Porter's just didn't seem to fit these sudden death cases since the only symptoms was a high fever. We did find the Sudden Unexplained Death in Childhood Program (SUDC) and read the countless stories of young child deaths that matched closely with our experience - no symptoms, high fever, overall healthy child, died during sleep, unremarkable autopsy. After a year of grieving we were both ready to take the next step and enroll in the research study. SUDC has partnered with Dr. Henry F. Krous MD, Director of Pathology Research at Rady Children's Hospital & Health Center out of the University of California, San Diego, and have been studying these types of deaths for the past ten years. Dr. Krous and his team of specialists have published several articles on possible causes of these sudden and unexplained deaths and have continued to research these cases. As a participate Dr. Krous provides a study death diagnosis at the conclusion of the case study.

Approximately two years after enrolling in the study we received the final study conclusion. It was deteremined by Dr. Krous, with the help of other professionals, that Porter's cause of death was (SUDC) and the manner was Natural.  We had the privilege of talking with Dr. Krous and Laura Crandall SUDC, program director, via phone to go over the results of the study. Dr. Krous shared that while influenza was found in Porter's lungs and nose the bronchial influenza culture was negative. In order for the virus to cause death there would need to be enough virus to show up in the culture not secretions alone. In addition to the lack of virus in the culture, Dr. Krous noted there was not enough inflammatory changes in the tissues which would lead to death.  Therefore, he concluded that the influenza B virus was inconsequential in the cause of Porter's death. He provided the analogy of someone dying in a car accident. Upon autopsy the pathologist finds the liver is larger than expected, however the larger liver did not cause the death. The death was a result of the accident. If the accident never occurred there may have been no repercussions from the enlarged organ. He did note that the fever seems to play a consistent role in SUDC cases. He found inconclusive evidence to point towards a febrile seizure as there were no bite marks on the tongue or lips nor a family history of seizures. Based on the findings, Dr. Krous recommended both of us get testing for Long Q-T Syndrome. In half the cases the syndrome is autosomal dominant which means only one parent needs to carry the gene to inherit the disease. For the other half of cases, there is a chance a gene could mutate and a person could develop the syndrome. If neither of us have the gene it would be unlikely for Emily to have the gene. However, this result could put Porter in the mutated gene group. Testing this gene for Porter costs around $5,000.00. For now we both plan to be tested this year.

We are forever grateful for the work of Laura Crandall and the SUDC program, Dr. Krous at the University of California, San Deigo and his team for pushing forward to find a cause of these devastating and unexpected deaths. For now we do not know what took Porter's life, and with the continued effort and research of these programs hopefully a cause will be identified. Please donate to this great cause.