My Noel, My Miracle: Born with X-Linked Hydrocephalus

March 12, 2014

After eight years of trying to have a child on our own, we gave up that idea. We were almost ready to adopt when I took one more test. We were pregnant! It’s a miracle!

Worry set in because I am a carrier of the L1 syndrome gene (x linked hydrocephalus) 50/50 chance that a boy is affected. 50/50 chance that a girl is a carrier. Either way, boy or girl, it was nerve wracking. We had to know, boy or girl, ASAP. We had to know, was he affected? We found out through ultrasounds that yes, he was.

Every month brought another ultrasound and more bad news. The fluid in his head kept building, pushing his brain against his skull. His head kept getting bigger. He was born by emergency c-section, five weeks early. He spent almost two months in the NICU. He has never learned to suck and swallow. He threw up all the time. He was born with a club foot, and several kidney stones. He also needed oxygen 24/7. He spent the next six months in and out of the hospital with surgeries and aspirated phenomena.

But he was alive! What a miracle!

We twisted his stomach and put in a g-tube. We fixed his club foot. We got rid of the kidney stones. Today he only needs oxygen at night through a bi-pap machine. He has no more surgeries planned. He is not throwing up. We are working on getting him to eat baby food with his mouth. He sits up on his own for about 10 seconds at a time. He is the longest living person, in our family, with this disorder. He is 1.5 years old. He recognizes family. He flirts with the girls. He is very ticklish and has the most infectious smile that lights up a room.

What a miracle!

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