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Heather Roach

Silas Continued

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7/18/2011
ANOTHER UPDATE:
Today our genetic counselor (Dan) called & he said our MicroRay test came back NORMAL.. 3rd test & ALL are normal. Which if our son has a syndrome we expected. I have been doing a bunch of research trying to see which syndrome covers most of Silas' symptoms & I found this: VACTERL ASSOCIATION.

http://emedicine.medscape.com/articl...erview#showall

This is considered a "rare disease" (actual statistics are so few that they are unkown). VACTERL is broken up into symptom categories normally associated with VACTERL & stands for the following:
V - Vertebral anomalies (unsure if Silas has)
A - Anal atresia (Silas has)
C - Cardiovascular anomalies (unknown if Silas has till birth)
T - Tracheoesophageal fistula (DONT think Silas has)
E - Esophageal atresia (Silas has)
R - Renal (Kidney) and/or radial anomalies (Silas has)
L - Limb defects (Silas has)
Then I started to YouTube VACTERL to see exactly what children with VACTERL's quality of life would be. I found this:

http://www.youtube.com/watch?v=WncwN...eature=related

after further research I also noted that CDH & VACTERL can be & have been seen together!!! Of course we wont know for sure until Silas is born BUT I have HOPE even more now than ever! It will be a LOOOOOOOOONG road to travel but if Silas hangs in there so will we and he can grow up as close to normal as surgeries can get him. Which is pretty damn close!
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