Birth Story

Ishan came into this world on October 21, 2001. He was a full term baby, and was born two days after his due date. Ishan weighed 6 lbs 13 oz and was 19 ¾ inches tall. Unlike most babies he came out completely blue and the birthing room was quiet. The nurse had to resuscitate him and give him oxygen before he could take his first breath. We had no inclination that something was different about Ishan until his birth. I had a normal pregnancy and delivery. He was immediately rushed to the NICU, where he stayed for 12 days before he was allowed to come home.

A battery of tests was done, and that’s when the neurologist diagnosed him with two disorders. The primary diagnosis was Cri Du Chat syndrome otherwise called Cat cry syndrome or 5p- (deletion of the short arm of the fifth chromosome). The secondary diagnosis was Complete Agenesis of the Corpus Callosum.

Ishan had a few feeding problems initially. But we were still able to feed him orally and did not have to put a tube. He came home with an apnea monitor, because he used to stop breathing while asleep. The monitor was just a precaution, and we could get rid of it by the time he was two months old.

Ishan was an extremely cranky and irritable baby and cried day and night, almost all his waking hours. The first several months were extremely tough. The lack of sleep (Ishan would wake up every two hours for a feed and it would take him a good 30 minutes to feed from the bottle), uncertainty of what to expect, and the devastating news of his diagnosis, made everyday in the first few months a struggle.

By the time Ishan was 5 months old he started sleeping more (3 hours between feeds). And at six months we started him on pureed solids. That seemed to be the turning point. He started sleeping for at least 5 hrs at a stretch and his crying decreased significantly.