My Son David

My now 3 month old son david was born with a disease called"digeorge syndrome". It consists of many possible medical difficulties, many of which, thankfully my son does not have. He does however have 3 very serious and complex heart conditions that will require many surgurys through the coarse of his life. At 11 days old, on the 30th of december he had a thrachiostomy because of his airway being blocked by his chin and toungue. He had his first heart surgury on the 30th of january and he will be having a g-tube and fundo on either the 26th or 27th of this month (march). HE IS MY HERO!!! he has been through more physical pain in 3 months that most people experience in a life time. He gets 2 shots a day in his thigh, he gets his heel poked for blood work every 6 hours, and he is on about 12 different medications treating verious problems. we are hoping to have him home by the middle of any and all prayers would be appriciated!!!! he is the light of my life, the most beautiful thing i have ever hurts me terribly to see him go through this. I wish i could taske it all away and i cant and that makes me feel powerless and useless as a parent. If any one who reads this has been in even a romtely similar situation please contact me. I would love to hear some success stories.

pebbles1219 pebbles1219
2 Responses Mar 19, 2009

I am a survivior of the same thing. I was born with problems they still haven't deciphered or diagnosed. i was born without the ability to suck or swallow as an infant. At 6 days i went in for surgery to have a g-tube put in. I constantly was undergoing surgerys for multiple things i still have no idea about. The doctors told my parents i would be deaf, blind, and mentally retarded as i grew up. i had spinal taps, multiple tests, MRI's and God knows what else done as a child to figure out what was wrong with me. As an infant i was only able to open my mouth about half an inch, which only added to the problem. I started vomiting uncontrollably at about 6 months, and because i couldn't suck or swallow, the vomit came out of my nose and continuously burned my esophogaus. I have experienced anemia, ulcers in my intestines, and polyps in my stomach as an adult. Thankfully, when i was 3 i had my tonsils removed, and at 4 ate my first meal, unplanned, at home. I'm proud to say i am TOTALLY healthy today. I had surgery in 2000 to break my TMJ bone and also had reconstructive jaw surgery in 2005 and now i am no longer due to have any more surgeries. I am a fully active, 19 year old girl. I've fallin in love, i've got great friends, i am DEFINATELY not retarded, in fact i'm one of the smartest people in my family of 7 girls. I consider myself to be and appear greatly normal. If my parents hadn't kept having faith and kept going to the doctor and being there for me, i wouldn't be here today. MY word of advice? have FAITH. The doctors and technology today is better than ever and i'm SURE you're son will come out healthier than ever and be a great son to you! If you ever need someone to talk to, i'm DEFINATELY all ears. :)

I feel your pain! My husband and youngest daughter have the deletion. They both have different issues associated with it. I left you a message to a link for you to check out.