Dear Ms Maggiore,
I forgot to get your e-mail address when you called last week, so am sending this to you via your Justice for EJ site. Firstly may I say that I did appreciate your call the other day. We did discuss your daughters death, and clearly there are still many unanswered questions you have concerning this and the lack of response from the coroner office. Over the weekend I tried to catch up with new developments, and I had a chance to review your response to the Elle article and hear more of your story through the recent interviews for both Splash Media and Cal State University Northridge.
Thank you for taking the time to review the latest news.
It would seem that you raise a number of valid concerns. A major one is the lack of HIV test results from the Coroners Office. I too would wish to know why did they were unwilling or unable to produce a result for Eliza-Jane. Their attitude appears to have been quite obstructive on this point, when you would imagine they would have been very keen to get any HIV positive result into the public domain to support their own conclusions in the case. I gather they have finally sent you some Western Blot results (this would be at least a year after their final report?).
No, the coroners office has not sent us lab evidence of WB results, nor will they confirm they ever performed the required ELISA screening. Their stated position is that they will not furnish this information absent a subpoena, which seems, as you point out, quite obstructive.
I am not clear about the banding (the phone line was rather bad at that point and I could not hear exactly what you said about this). Is this test the same one that the autopsy report states was sent to Quest Diagnostics?
In response to our request for lab evidence for Eliza Janes presumed/inferred HIV status, we received a photocopy of 10 unlabeled WB strips of varying results. Her name was handwritten at the top of the photocopy with no other explanatory information. They refused to tell us which strip/s pertained to Eliza Jane but did say her blood was tested once on the date written on the top of the page.
Another important question concerns the rapidity of Eliza-Janes collapse and the fact that (apart from symptoms consistent with a minor infection in the 2 weeks or so before her death) she appeared to all intents and purposes to be a perfectly healthy child. Much has been made about the main diagnosis of Pneumocystis pneumonia and I can appreciate that you have received conflicting information about this, since in EJs case there are a number of features that are inconsistent with what we might regard as a classical case of PCP. I know you believe her collapse was triggered by an amoxicillin reaction, and although I think that was unlikely.
Why do you consider the sudden cardiac arrest with no indication of respiratory stress or respiratory failure unlikely to have been triggered by amoxicillin? How would you account for the enlargement of all major organs and the fluid in all the cavities if not for the amoxicillin?
EJs acute deterioration was not particularly typical of PCP and may have been caused by some other factor or intercurrent infection. However there would be no way to determine whether there was another infection process at work I doubt appropriate samples were taken at the time and I doubt that any serum still remains stored in the laboratory from the other blood samples taken at autopsy that could be analysed (for instance for other viruses such as EBV, CMV or Parvo).
I believe proper samples were taken. We spoke with the ME who performed the autopsy right after she finished (not the same ME who drew the conclusions in September) and she indicated they would be trying to learn something from cultures as there was nothing apparent from the autopsy to indicate why EJ had died. We called 10 days later and were told nothing had become apparent and they would continue to try to grow something in cultures, and also check for poisions and toxins. I believe there is stored serum. If there were, what would you suggest testing for?
We touched on some other aspects of the case such as the liver and thymus abnormalities and encephalitis.
Indeed. As you may recall, I mentioned that the medical literature indicates the thymus often decreases during illness or as a result of malnutrition in HIV negative individuals. A case in point is that of Destiny Jacobo whose autospy is compared with EJs. From what I understand, Destinys thymus was smaller in proportion to that of Eliza Janes relative to her age and weight yet the coroner did not comment on that in arriving at his conclusion nor was that cited as evidence of immune dysfunction. Do you believe that the presence of a single protein (p-24) in the absence of all clinical symptoms of encephalitis (infected spinal fluid, high fever, swelling of the brain, loss of mental acuity, head ache) is sufficient to diagnose encephalitis? Do you know of references in the medical literature on this?
Combining my understanding of the autopsy findings with my experience of illness due to HIV, I still feel that most of these abnormalities are explicable with a single underlying condition such as HIV infection, but again there are inconsistencies as you point out (for instance the lymphocyte counts).
During our conversation you suggested that EJs higher than normal total lymphocyte count indicated normal response to infection. You also suggested that there was no inflammation of the lungs found at autopsy because EJ could not mount a normal inflammatory response. This seems contradictory. Can you please explain? I cannot offer comment on the liver as I dont know enough about the state of her liver and what that might imply. Could you briefly summarize your conclusions or concerns with regard to her liver and how that pertains specifically to AIDS?
I dont know if you wish to have my comments concerning these as a way of trying to resolve any areas of diagnostic confusion. I have spent most of my medical career as a physician involved in caring for adults and children with infectious diseases in Africa and the UK, and consider myself to be an experienced clinician. I am familiar with the diagnostic tests and pathology associated with infections, but I am not a trained virologist with expertise in laboratory testing for HIV, nor a histopathologist.
I very much appreciate your comments and your willingness to engage in this exchange. This is quite a refreshing change from the rude or dismissive remarks made by people claiming expertise in the matter who have published their opinions but are apparently unwiling to engage in polite dialogue.
I would welcome the opportunity to look at any copies of the lung section slides. I could also arrange for these to be reviewed by an appropriate UK histopathologist in a blinded manner, without mentioning anything about HIV.
I very (very) much appreciate this offer but have to get the OK of our attorney as I mentioned at the start of this reply.
The autopsy report states there were sections from all 5 different lung lobes, and that there were 2 staining procedures, an H&Eîstain, which is standard, and a GMS stain, a type of silver stain. There were also changes reported in the other organs. Would you have these slides available also? (I assume you have more material available to you than just the 2 lung sections in the Al-Bayati EJ/Destiny Jacobo comparison of lung pathology?) I would naturally treat anything you might send me as completely confidential and assure you that any communications between us would also remain confidential.
We have all the lung tissue slides and the brain tissue slides but not the special stained slides. From what I understand, these are more or less close ups of what the regular slides show and dont offer much in the way of new evidence to consider. Do you think these special stains might reveal something not found in the regular slides? If so, could you please explain?
Finally, is it possible to send me a scanned copy of the letters that Elle published? The US edition is not available in the UK, and I would like to see exactly what I wrote as I have not been able to find my own copy on file.
We just bought a scanner but I am hopelessly hopeless when it comes to new technology so I have to ask my husband to work it. Hes busy building a redwood fence in our backyard but should be done tomorrow and able to scan the Elle letters page for me. I will send it to you as soon as I have it. If the US edition of Elle is not available in the UK, how did you end up reading the article about me that you commented on?
I do feel very strongly about the issue of HIV and AIDS, particularly in Africa, and I recall trying to make the point to Elle that perinatal transmission of HIV occurs not only in the USA but has occurred in thousands of children in countries like South Africa because of their tragic policies regarding HIV drugs in pregnancy. I think I used your own situation to illustrate the possible consequences. If I wrote anything that gave you personal offence, I do apologise, since this was not my intention.
My impression of your letter was that you suggested my daughters death is the price I pay for my beliefs. This seemed like a harsh summary which is why I called you. I wondered if that was really how you felt about the matter.
I have no doubt that we will continue to have irreconcilable views on what is HIV and what causes AIDS, but having had the chance to speak to you and hear of your story in more detail on the web, if there is any way I can be of assistance to you please let me know. In particular, if you wish to explore a clinicians perspective concerning the possible causes of EJs illness and how they might tie in with the autopsy findings, I would be glad to contribute if I can. Regards, Peter Flegg email@example.com
Again, I appreciate your interest in dialogue and would very much like to consider you a resource.
(PS. Just one small point I noticed about your own response to Elle I see that you corrected Ms Reynolds when she stated EJ had sores in her mouth suggestive of herpes saying the autopsy report makes no mention of these. Actually the section of the autopsy report with the graphic of a childs body [20 J] did state at the top of the page White-tan plaque-like oral lesions on upper and lower lip, and the mouth has an arrow from it indicating oral ulcers. The autopsy checklist  also mentions these lesions. The path report of slide 6 states that this is a section of lower lip indicating possible viral inclusions. So it does seem as though EJ may have had some minor herpes lesions, not that this in itself is in any way unusual in a child with some other acute infection or illness. How Ms Reynolds was aware of these I dont know unless they had been specifically brought to her attention).
The point I tried to make with Elle my letter was altered without my knowledge was that the first page of the report states the lesions were sectioned and cultured when in fact the report itself makes no reference to a culture or any results from a culture that would indicate a viral origin to the lesion (it was actually one lesion on her lower lip, not many lesions). My understanding of the word lesion is that it means an abnormality caused by injury or disease. In fact, my daughter had been picking at a patch of dry skin on her lower lip and had never had an incidence of herpes. Like you, Reynolds, and others, the police investigating the case took the coroners report to mean EJ had herpes at the time of her death and therefore must have suffered from herpes lesions in life, however, no one no neighbors, friends, playmates, babysitters, teachers, etc in daily contact with Eliza Jane could report ever having seen her with any kind of sores on her lips, mouth, face, etc. She was a beautiful little girl with rosy skin who died with that pink tone still in her cheeks. She never turned blue and did not even have a cough in the days before her death. In fact, the local pediatrician who is not being charged with negligence actually ruled out pneumonia when he examined EJ and advised us to take her to the park! That is one reason why I sought a third opinion. What kind of medical advice is Take her to the park?!