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!

3 thoughts on “My Noel, My Miracle: Born with X-Linked Hydrocephalus”

  1. Tracy Felix says:

    I am so happy to share our story on here. Follow our whole story on my blog at https://xlinked1.blogspot.com I hope I can find someone else out there that is battling this rare disease. Lets spread awareness and help all of our rare people!

  2. Kat says:

    Love this story! Makes me tear up every time. Give that little miracle a hug for me and head rub hehe I know how much he loves them 🙂

  3. Dave Rivera says:

    We cheer for Noel and team! Thank you for sharing this heart felt story. All our love and surely all our devotion! Noel is in our prayers!

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