Summer loving

Summer loving

Tuesday, February 16, 2010

Kernicterus is a 4 letter word

Blame is such a powerful word. No one ever wants to be blamed for something, especially when it is something bad. As a mother of a special needs child, I spend a good part of every day in a blaming frame of mind. I blame myself for what happened to Maclain, I blame the government for not providing enough funding, I blame our therapits for not doing enough to help "fix" Maclain and so on and so on.
It turns out that in Maclain's case, the real blame is on the doctor who was supposed to be helping him while he was in the NICU. Maclain has a condition which is known as Kernicterus. It is what has caused his CP, his hearing impairment, and a few other issues. And the worst part of it all, is that this condition is 100% preventable. Kernicterus is caused by too much bilirubin in a baby's system. Or in more laymen terms, a baby gets Kernicterus from untreated jaunice. If the doctor who was treating Maclain in the hospital had of paid attention to the obvious clinical signs and put him under the bili-lights, our life and Maclain's life could be dramatically different. Unfortunately we will never know because this doctor chose to ignore these signs, choosing instead to believe that Maclain was suffering from a brain injury caused by his twin to twin transfusion which was not the case. I sometimes wish that his issues were caused by something as unavoidable as TTTS, because it would have been something that would have been out of anyone's control.
It saddens me when I hear about kids who have been affected by this condition, because it should never happen. Here is a link to a site for Parents of children with Kernicterus.

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