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Justice Levi Quent Isovaleric Acidemia 6 years old |
At two-weeks old, my nephew, Justice, became catastrophically ill. Why? Because he wasn't screened by Tandem Mass Spectrometry (MS/MS) at birth. Why? Because it wasn't offered to us and we didn't know it existed. This screening could have prevented him from teetering on the edge of a coma. This screening could have prevented him from being put at high risk for retardation and sudden death. This screening costs only $25! Justice had stopped eating, lost weight and became lethargic. This baffled doctors, so he was sent to Children's Hospital in Seattle. He was so tiny that the needles and tubes sustaining his life seemed to weigh him down. Our family was devastated, as Justice lie there fighting for his life. Time was against us. The doctors were still at a loss until his nurse noticed a strange "dirty socks" smell. I thank God for that nurse. And for Dr. Scott, who spends much of his time teaching the medical community about metabolic disorders. At the time, Dr. Scott was lecturing at the nearby University of Washington. He quickly diagnosed Justice as having Isovaleric Acidemia (IVA). IVA is one of many hereditary metabolic disorders that are detectable by MS/MS and treatable with simple dietary changes and supplements. So why wasn't Justice screened at birth using MS/MS? I've never found a "good" answer to that. Justice's acute attack could have been avoided. The ocean of tears, shed by family and friends, could have been avoided. The danger of complications due to late diagnosis could have been avoided, if only he would have been fully screened at birth. |
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Everyday babies are put at risk
for retardation and sudden death due to lack of
comprehensive screening. This is the worst kind of
negligence. Many of these children are being permanently
impaired and many of them are dying. No child or family
should have to endure that kind of heartache when it can
be prevented. Especially when most of the disorders are
treatable with simple dietary changes. It's just a matter
of comprehensively testing EVERY baby. Comprehensive newborn screening is essential to the welfare of our children, then these kids CAN lead nearly normal lives. But their disorders MUST be caught and treated at birth. Justice's outcome was A BLESSING! He responded well to treatment, has no permanent damage and his acid levels are being well managed; So he's developing on schedule and hasn't suffered anymore acute attacks. Other babies haven't been so lucky. And to think that the world almost missed out, on the joy of this smiling-faced little dynamo, because no one thought his life was worth $25! |
| OTHER
IVA STORIES |
 Justy's Song |
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More about Justice |
For more information visit my links page and click on Save Babies Through Screening. Revised 12/22/02 |