Aside from a harried question in the ambulance on the ride to Rainbow Babies & Children's Hospital on June 29, 2007, no one ever asked my family or me any questions pertaining to Amanda's history. And when I mentioned Elwood's Moyamoya, the EMT waved me off after learning he'd had his surgery...as if that was supposed to "cure" him of any and all future episodes (see the page on Moyamoya Disease for answers to this). Additionally, I never got to mention any of my family medical history or begin to expound on all the problems poor Amanda had in her short life! He waved me to silence and turned his back to me.
At the time I had no idea how important it was to have told anyone the following, and Elwood never got asked those questions (at that point he was being lead to believe Amanda was going to be just fine anyway).
When my family arrived at Rainbow Babies & Children's Hospital, they were herded out of the room. A few years afterward, I finally asked my mother and grandmother why they never came back into the room. My mother told me that they weren't allowed to return to the room and that no one ever asked them any questions about her family history. My grandfather was telling them, "If you need blood take all of mine" - the last I heard any of them in the room. I didn't think about it after that. In fact, I was asked at one point if I'd want to join them. I looked at the woman as if she was nuts and said, "I want my baby." Truer words were never spoken.
My question today is this: why did my daughter have to die in my arms with three strangers in the room (including the staff with the stethoscope) but my family was forced to stay down the hall?
See an article in Pediatrics regarding this respiratory distress condition. When I discovered that my daughter was experiencing apnea, I was told by a nurse that apnea is "normal" in infants and that they "outgrow it." So when she grunted, I assumed this was just a cute noise babies make.
2001 Article on Grunting Pediatrics
Dr. Innis, the hematologist authoring one of the reports published on this website, was the first to be enraged when he discovered there were no lab results for standard bleeding time tests (PT and PTT) in the materials I gave him because they simply didn't exist. I went to Rainbow Babies and Children Hospital to request them, assuming that I hadn't been given all the medical report materials. Instead, I was told, "The tests were not ordered." I had thought there were two locations in the medical records pertaining to where they were ordered and even discussed with me, but it seems I was incorrect. I will take them at their word, but if they were not ordered...why not?
A recent case illustrates the need for my question to be answered. An 11-month female fell down carpeted stairs to the basement and presented with subdural hematoma, which instantly aroused the suspicion of the hospital staff. They contacted authorities because the pervading belief is that these injuries were consistent with Shaken Baby Syndrome, not a short fall down stairs, least of all not if they are carpeted! Fortunately, this girl survived her operation and a second blood examination was taken. This time, the blood coagulation results were not normal and a minor case of von Willebrand was discovered.
Please read this case in the Forums: topic RH or SDH "11-Month Old with von Willebrand & Minor Fall History (2011)".
My daughter was born nuchal hand, suffered terrible jaundice in the first weeks of her life, experienced horrid cradle cap, acne, and was vomiting daily (not necessarily after feedings), among a host of other problems that weren't properly addressed when we brought them up to the various pediatricians we had look at Amanda. Most were certainly not fatal, but combined could have brought about dehydration and some of the other injuries ultimately attributed to a short fall that obviously could not have been caused that way (the differential testing would have come in handy for this, but no one felt the need since it was already determined to be child abuse before she even was brought to the first hospital).
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