Thursday, April 3, 2014

CHARGE Syndrome

Kaleb Campbell Townsend 10/28/02 - 10/06/13

Kaleb Was A CHARGEr

CHARGEr refers to an individual that has been diagnosed as having CHARGE Syndrome. To learn more about the syndrome, criteria, and history behind the diagnosis, click here. CHARGE is an acronym; each letter stands for a different abnormality. 
C - Coloboma - Kaleb had a coloboma of his optical discs. What this meant was that he did not see normally. He was considered legally blind.
H - Heart Defects - K-man was born premature, so his heart did not close properly. This was solved in the NICU and he never had heart issues prior to being in the NICU.
A - Astresia - for Kaleb, this occurred in his nasal passageway. As he grew older his openings did grow as well, but it was difficult for certain procedures that he had to go through.
R - Retarded Growth - it wasn't until later that I was informed that CHARGEr's are shorter in stature. As well our Kaleb was born with a small stomach and an enlarged liver. 
G - Genital - abnormalities.
E - Ear - individuals that have been diagnosed with CHARGE usually have the square-shaped ear.

Kaleb's CHARGEr square shaped ear

CHARGE is a combination of birth defects and is diagnosed as a genetic disorder. The spectrum goes from individuals that are unaware that thy have CHARGE - to severe medical conditions and handicaps. According to The CHARGE Syndrome Foundations website the disorder "occurs in about one in every 9-10,000 births worldwide". Lucky us! While Kaleb had many challenges, his CHARGEr personality shined through. His smile was proof that no matter the obstacle, the human spirit perseveres. We miss his smile everyday, but are thankful that God blessed us with such a sweet angel.