Tamara Jane Goldman
January 30, 2004 - March 24, 2004
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UPDATE FROM MANNY (E-MAIL DATE: APRIL 29, 2004)
After a month of testing and examination of samples, the Medical Examiner has concluded that TJ died from pyelonephritis (kidney infection) and E. coli sepsis (bacteria in the blood, leading to shock). The baby also showed inflammation of the urinary bladder, and there were small kidney abscesses, leading to the assumption that she had an ascending urinary tract infection.
[Note: pediatricians I have spoken to believe the infection could have been hematogenous instead, originating from the gastrointestinal tract.]
She had no congenital abnormalities. How she became infected remains a mystery, as we were very careful with her hygiene. Why or how her distress at breastfeeding that night led to the fatal moment also remains a mystery, although we cannot exclude that it was a coincidence.
So this is not SIDS after all.
The Patent Ductus Arteriosis (PDA) that was found anatomically in the initial autopsy examination did not have anything to do with her death. The PDA was determined to be "non-functional", i.e., the blood vessel to the lungs was closed internally and there was no shunt of blood. The PDA finding was only external.
TJ did have a hepatitis B vaccination on Feb. 12th, about 6 weeks before her death. Unless the hepatitis B vaccination were contaminated with E. coli, it is unlikely that it was involved directly in her death. Whether there was an indirect involvement, for example, by altering her immune system in such a way that it became ineffective in dealing with the bacterial infection, one can only speculate.
On the Friday before she died, I thought she had a stomach virus because she threw up (the only time she ever threw up that I knew of), and she cried a lot Friday and Saturday night, needing a lot of comforting, every half hour to an hour. Her cries were also weaker than normal. On Saturday, we measured her temperature under the armpit (she hated that), and got a reading of 100 F. By Sunday night, her cries had resumed their normal volume, and she went back to her normal sleep patterns, 4-5 hours starting 10 or 11 PM, then crying for a feeding, then another 3 hours sleep. I assumed she was on the mend. I continued to measure her temperature every day, switching to a forehead strip (she didn't like that too much either, but it was fast and I could get a reading before she objected too much). I validated the strip on myself: I read 99 F, and she read 100 F. She stayed at that temperature right up to the last measurement, on Wednesday early evening. She felt warm subjectively, but objectively it was only a low-grade fever, and I thought we could wait for her scheduled appointment with the pediatrician on Thursday. I will forever regret not taking her in to the doctor on Monday, though we'll never know if the pediatrician would have picked up that something was seriously wrong and ordered a blood culture.
Try, try again
Naomi, although still in severe depression, has courageously decided to try again to have a child, and we are fortunate that her hormone levels are encouraging that she might be successful.
Some people think I'm going off the deep end or am in a state of denial, but I have begun to explore the possibility of having TJ cloned. We had the baby's cord blood harvested and saved at her birth, and it is stored in a blood bank. (Several commercial firms offer this service for new parents.) Cord blood is filled with stem cells; reproductive cloning of mammals to date, to my knowledge, has only used somatic cells (i.e., differentiated cells from an adult). Think how much better it would be to have the genome from a stem cell!
Obviously, there are political and ethical minefields to traverse to even attempt this. The Bush Administration has banned human cloning research. Perhaps we could obtain a waiver or exemption from the US ban on human cloning research since the cloning would not involve reproduction of a living human but would give our little girl another chance at life, as her identical twin, born at a later time. (For purists, the clone would not be entirely identical since some of the mitochondria would come from the egg donor [as well as some from the fused stem cell], unless Naomi were able to provide the eggs; however, the project would have a greater chance of success with a younger egg donor, and Naomi needs to apply her efforts to proven methods of conception.) Perhaps this could be packaged as therapeutic cloning rather than reproductive cloning, because of the baby's untimely death? This project might be seen as less morally ambiguous than most other human cloning projects.
If, as is likely, this were not allowed in the USA, I will try to find a reputable program abroad that might be interested in pursuing this. (Japan has been recommended to me.) As for funding, if I find a reputable program, perhaps one of the private health foundations might be willing to underwrite the project.
Or, we could wait a few years until the procedure becomes established -- her frozen cord blood stem cells should be good for decades.
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