Hunter Gage

Hunter Gage
DiGeorge Syndrome Survivor

Monday, August 30, 2010

The begining


Many people have never even heard of this syndrome including myself until I was pregnant with Hunter. At my 2cd ultrasound I was more terrified then I have ever been in my life. It seemed to be going well and the ultrasound tech didn't say much during the ultra sound so after he gave me my pictures I was on my way home not thinking much of it when he called my cell phone asking me to come back in right away for more pictures. That already had me worried. Through the whole second set of pictures I was laying there scared and all alone, they're sperm donar had bailed on me a few months before this, his alcohol was more important to him then his wife and kids and my mom was at home watching kiya. After he was done taking all the pictures he asked a cna to escort me to a regular room to await the Obgyn so he could tell me what was going on. When my Dr. finally came in I was already almost in tears. He was very polite, sat down next to me and explained that they found in the pictures that Hunter would be born with a Cleft Lip and possible Cleft pallet. he was still too small yet to get exact diagrams of how big the hole would be in his lip so the dr. reffered me to valley childrens hospital for a 3-d ultrasound and also reffered me to a high risk pregnancy doctor in fresno. After hearing all this news I was in shock, I had to force myself out of the clinic and to my mom's van and I just sat out there and cried. Why my child? Why me? What did I do wrong to make this happen to my innocent baby? The only support I had at the time was my mom and I would wake up crying in the middle of the night from horrible dreams on how I thought my baby would look like. Finally the time came to when we had to go up to valley childrens for the 3-d ultrasound. They were able to take exact measurments of the cleft lip and cleft pallet and they did a very throurough ultrasound, this is how they found his heart condition. As if his cleft lip and pallet wern't enough the ultra sound tech there had to explain to me about his heart. He has what's called Tretrology of fallot with absent pulminary valve syndrome. Basically what that means is there was a huge hole in his heart, one of the arteries was so enlarged that it pushed his left lung up to where it didn't develope right and he was missing the pulminary valve vein. After this it was constant dr. visits to my high risk dr in fresno wich was a 45 minute drive at the time. The first visit with him he already indicated that he believed Hunter had Digeorge syndrome. it's a very rare genetic disorder that affects one in 4,000 to one in 6,395.
well that's enough on the subject for one night alot of hurtfull memories are being brought up with it so i'll stop for the evening. comments are welcomed and there will be more no worries.