CareyD

Hi Carey,
So glad to hear that your son is doing so well. My son is a 22 year old survivor of a severe LCDH. He is doing well now and is in college. He had a very rough road for the first two years but you would never know that he had such a life threatening birth defect now. I will keep your son and family in my prayers.

He is on a trach and gtube he is vent dependable when he is sleeping and he aloso has a micro deletion

My son Ben required Continuous Positive Airway Pressure(CPAP) for about 2 months until he was strong enough to breath on his own and then was oxygen dependent for a year. He had an NG tube at first and then he went to G-Tube. It's better to have the G-tube to help prevent feeding aversions(baby loses the desire to eat with the NG tube). Ben struggled with feeding aversions and failure to thrive because of his reflux and some other issues. I am not familiar with micro deletion. That sort of testing was not available when Ben was born 22 years ago. We had basic genetic testing but the testing and treatment has improved dramatically over the course of the last 22 years.
I understand the roller coaster each day brings for you. If you want to pm me at carolhuber3@hotmail.com, I would be happy to answer any questions you might have or lend an ear if you need to talk.
I pray your baby continues to grow stronger each day and you are granted peace and strength.
Hugs,
Carol