Mother-of-two Kiersty Caesar-Taylor now believes that she and her husband, Donovan Taylor, unjustiably poisoned their young baby with medical treatments prescribed by their HIV consultant. Kiersty and Donovan, who were diagnosed HIV+ when their baby, named Rainbow Taylor, was 11 weeks old, at first followed medical recommendations to give the anti-retroviral drugs (ARVs) prescribed by their medical consultant. At first Kiersty stopped breastfeeding and she also started Rainbow on ARVs prescribed by their consultant to reduce the possibility of Rainbow being infected in case she had not been infected with HIV already, but then they were told from a viral load test that she already had HIV. Kiersty was allowed to resume breastfeeding but was told to continue with the prescribed treatment for Rainbow, for a likely 2 year period as a minimum
Kiersty says, "We Were told that the purpose was to keep the viral load down to prevent HIV from harming Rainbow's immune system. As a responsible mother I asked about possible side-effects, especially as the doctor said she'd have to be on the drugs for (at least) the next couple of years of life, but I was assured that allowing HIV to run wild would be much more serious than the minimal risk of serious long-term side-effects. Naturally, concerned about our daughter's well-being we diligently gave her the treatment they prescribed".
But almost immediately problems became apparent. Rainbow, who up to then had been thriving and growing normally, immediately began vomiting up after having the medication, requiring Kiersty and Donovan to top up the medication as directed. She also quickly became more listless and sleepy, was more unsettled and cried a lot more as if she was in pain.
Kiersty also noticed that the mild eczema Rainbow already had massively flared up and her face was covered with a substantial rash. "The doctor told me that was nothing to do with the ARVs", says Kiersty. More worryingly, despite intensive efforts to ensure adequate feeding, her bowel movements became substantially abnormal with severe constipation and her rate of growth seemed to be slowing down dramatically, which was particularly noticeable on her arms and legs and also her face. "I was becoming increasingly concerned that the medication, which we were giving her to save her life, was actually causing serious harm. The prospect of long-term treatment with these or similar drugs really frightened me".
The couple intensified their research efforts to find out more about the meaning of their HIV diagnoses and of the relative risks and benefits of treatment. "One of the medics had warned us not to check the internet because there was all sorts of rubbish there about HIV, and it might be overwhelming and alarming", said Kiersty, "But what we were finding was some very authoritative sources that raised serious concerns in our minds. What was really worrying me also was that when I asked some probing questions at the clinic, I was told I was a natural worrier and my concerns were pretty much brushed aside. Instead I was told Rainbow was doing very well because her viral load had gone down. Yet all I could see was my baby becoming sicker and looking and feeling lifeless ".
The concern about the lack of Rainbow's growth since starting the ARVs and it's consistency with the evidence they had uncovered, and the disparity with what they were being told by the doctor led the couple to do an experiment: Having been warned by others it could be dangerous to withdraw any strong medication suddenly they gradually withdrew the ARVs from Rainbow without telling doctors to see how she fared, as by then they were concerned about how the doctor would react to such a proposition. Once the treatment was stopped it didn't take long for Rainbow to perk up. The rash on her face quickly receded and her growth returned to normal and even the Drs unknowingly had said "it's the best I've ever seen her". "Her behaviour returned to normal as well and she didn't seem to be crying in pain in the way she had before. It was absolutely clear to us that the drugs had been doing her serious harm and causing her real distress", said Kiersty.
"While she was on the treatment there were so many things that were different I couldn't focus on all of them because I was paying close attention to some major ones, but looking back there were some other serious signs as well. I know babies wiggle their limbs about in a sort of uncontrolled manner, but there was something about the movements on her left side that she did 5-10 times a day. Since she's come off the medication those have stopped. In retrospect it looks as though she was having some kind of convulsion", Kiersty said. "If there hadn't been so many other things concerning us at the time, that alone would have made us wonder what the hell was going on inside her".
Doctors had wanted the couple to try Rainbow on Abacavir as an eventual alternative to the AZT, "...but when we gave her that she projectile vomited. We gave up on that very quickly. Yet when I told the doctor, he brushed it off as her simply 'not liking the taste'. At that point I really wondered if he expected us to believe that, or if he just wasn't right in the head", she said.
She added, "Another thing that caused me concern - I couldn't help noticing that nearly everyone at the clinic was black. Intuitively that didn't seem right to me somehow given the disproportionate representation. I’ve since found out the reason why that might be, and I’m going to investigate that further”.
But aside from medics’ extraordinary interpretations of own child’s symptoms, the evidence of her own eyes seemed to confirm the evidence they had seen about serious long-term harm from AIDS treatment given to children. “At the clinic, all these children who were being 'saved' from HIV by the drugs seem to have all sorts of developmental problems. Even the nurse admitted this was quite common, which supported the evidence we had found - yet the doctor seemed to sidestep my concerns about such risks. The clincher though was finding out about a similar case to ours where the child also suffered considerable pain and lack of growth while on ARVs, yet when she was taken off them she eventually recovered from the side effects, grew up healthily and after a couple of decades has now had her first child".
Kiersty noted that doctors seem to be absolutely obsessed with viral load at the expense of clinical health and well-being. "It is really striking that in our case, at the beginning when Rainbow's viral load was high, she was healthy and growing, and doctors thought she was dangerously ill. When she started on the treatment her viral load plummetted like a stone and doctors said she was doing really well, yet her health suffered terribly and her growth stopped and she even became thinner. But when we took her off the drugs and he health and growth both recovered dramatically, doctors have now become very concerned because her viral load has gone up. Rainbow's actual health seemed to be opposite to the viral load numbers. There's something not right going on here, that they seem to be more concerned that the numbers look right than her actual physical health"
Kiersty added, "And they seem to be trying to keep parents in similar situations from getting together as a group. It's as if they want each set of parents to feel isolated. They didn't put us in touch with any others despite repeatedly asking. It's as if they want each set of parents to feel isolated.
She finished, “Ultimately we're very angry that we were misled into unwittingly poisoning our own baby daughter with our own hands. We think more people should be made aware of what we've discovered about the drugs being prescribed".
Mother-of-two Kiersty Caesar-Taylor now believes that she and her husband, Donovan Taylor, unjustifably poisoned their young baby with medical treatments prescribed by their HIV consultant. Kiersty and Donovan, who were diagnosed HIV+ when their baby, named Rainbow Taylor, was 11 weeks old, at first followed medical recommendations to give the anti-retroviral drugs (ARVs) prescribed by their medical consultant. At first Kiersty stopped breastfeeding and she also started Rainbow on ARVs prescribed by their consultant to reduce the possibility of Rainbow being infected in case she had not been infected with HIV already, but then they were told from a viral load test that she already had HIV. Kiersty was allowed to resume breastfeeding but was told to continue with the prescribed treatment for Rainbow, for at least a 2 year period as a minimum.
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