Emma’s Grace

We had a neurologist appointment on January 22, which generally went well.  One item that we learned during that appointment was the explanation for the initial Canavan’s diagnosis.  The diagnosis came about due to the high level of NAA in the urinalysis that was run at the hospital.  After the contradictory results from the MRS, the urinalysis was re-examined.  In fact, the NAA levels were not high, but were the result of a misreading: the level of another chemical was mistaken for the level of NAA.  Then, since Emma was still doing poorly after her bout of seizures, the physical exam seemed supportive of the Canavan’s diagnosis.

Those six days were a nightmare, and by far the worst in our lives.  However, neither of us hold anything against the doctors for this mistake.  Errors happen, and the doctors followed up appropriately.  We suffered from a bad combination of events, starting with the misread of the urinalysis, compounded by how poorly Emma was doing that day, extended by the radiologist leaving before we had results (he didn’t know we were waiting for them), and finally extended even further by the holiday weekend.  Almost any other time that this could have happened, the mistake would have been caught in a day or two.

The doctors involved apologize for the mistake, and we warmly accept the apology.  As we have expressed, we would rather they think they found something, tell us, and go through the process of confirming or disproving it, rather than miss something and make things worse in the future.