SOMETIMES RUMORS TURN OUT TO BE TRUE
My real purpose in revisiting a painful incident was to critique opinions that the tragedy proved that all chelation is unreasonably dangerous. Because one of chelation’s most vocal internet critics expressed a reasonable opinion that the direct cause of death was hypocalcemia, I took pretty seriously the rampant rumors that the treating physician, Dr. Roy Kerry, mistakenly used Disodium EDTA rather than Calcium EDTA. Although I ordinarily believe it wise to avoid spreading rumors, it seemed the most likely explanation for hypocalcemia. Moreover, the rumor’s liklihood provided reason enough not to express firm opinions about the lessons to be learned until we knew the full truth. It now appears that the rumor was true.
The Pittsburgh Post-Gazette reports that the autopsy report was obtained and reviewed by Dr. Mary Jean Brown, chief of the Lead Poisoning Prevention Branch of the Centers for Disease Control and Prevention. The CDC is not generally known for its endorsement of the hypothesized link between heavy metal toxicity and autism. Nor can Dr. Brown, a recognized authority on chelation, be considered a proponent of chelation as a treatment for autism (as is apparent from the article).
Despite any reservations Dr. Brown may have regarding the efficacy of chelating autism patients, she does not place the blame for this death on chelation itself, but rather on the wrong form being EDTA used:
“It’s a case of look-alike/sound-alike medications,” she said yesterday. “The child was given Disodium EDTA instead of Calcium Disodium EDTA. The generic names are Versinate and Endrate. They sound alike. They’re clear and colorless and odorless. They were mixed up.”
The article indicates an opinion by Dr. Brown, that “if it were administered accurately, the procedure would be harmless.” That statement is debatable. We must never ignore the fact that chelation, like most medical procedures, carries a degree of risk. And that risk must be carefully analyzed and weighed before chelation is considered.
Like any prudent parent, I want to see appropriate clinical trials conducted to determine both the efficacy and specific safety of various forms of chelation for treatment of autism in cases in which metal toxicity appears to have played a role. But it is worth noting that Dr. Brown, described by the Post-Gazette as “one of the nation’s foremost experts in chelation therapy,” obviously believes the relative risk to be the same regardless of whether autism is involved:
Dr. Brown said the same mix-up happened in two other recent cases: a 2-year-old girl in Texas who died in May during chelation for lead poisoning and a woman from Oregon who died three years ago while receiving chelation for clogged arteries.
Dr. Brown said that in each case, the blood calcium level was below 5 milligrams. Normal is between 7 and 9.
The correct chelation agent -- Calcium Disodium EDTA -- would not have pulled the calcium from the bloodstream, she said.
. . .
She said it is well known within the medical community that Disodium EDTA should never be used as a chelation agent. She quoted from a 1985 CDC statement: “Only Calcium Disodium EDTA should be used. Disodium EDTA should never be used ... because it may induce fatal hypocalcemia, low calcium and tetany.”
“There is no doubt that this was an unintended use of Disodium EDTA. No medical professional would ever have intended to give the child Disodium EDTA,” Dr. Brown said.
So it appears that I was right to urge waiting for facts before making broad generalizations. But it gives me no pleasure to be right. No matter what caused this tragedy, the Nadama’s loss remains. The way any of us can honor their grief is to learn from what happened.
The knowledge that the evidence now shows this incident to be a single case of malpractice rather than an inherent and fatal problem in the protocol will not stop the controversy. There will still be voices screaming of the dangers, although their anger is truthfully less about the dangers of chelation and more about the audacity of using a medical procedure to decrease the impact of autism.
Not long after this is posted, we will start to see comments urging a very different lesson than the facts suggest. Some of those comments will likely accuse me of using a dead child to make a point. That might be fair criticism so long as the accuser is not doing the same. Ironically, however, I expect that some of those who shout the loudest will be the same ones who will invoke this child’s name often to support their own narrow views. I am tired of the shouting and I am tired of the disrespect shown to the Nadama family. I pray that this will be the last time I feel the need to write of this incident, but I suspect that the actions of others will dictate otherwise.
Not long ago, we were urged to light a candle for Liz Birt. That was appropriate; she was a remarkable woman who deserved a great tribute. But tonight, I’m going to light a candle for Abubakar Tariq Nadama, and then I’m going to give my son an extra hug before he goes to sleep.