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Caught off guard

Hello everyone!
My son Gabriel was born with PFFD. I found out about his condition when I was about 17 weeks pregnant. My mind went about a zillion miles per hour when the Dr told me what he saw on the ultrasound. They gave me a couple of options on what to do with the info that was given to me including abortion. That decision was easy to make.....I"m gonna keep my baby no matter what they told me he had. I was blessed to be given the opportunity to have a child so I was gonna have him the way he was given to me.
I tried to prepare myself about his condition before he was born but at the time I was given the term Focal Femoral Hypoplasia. A lot of the info that I found was old so I was anxious to see what he looked like and what was really wrong with him.
He's almost 17 months old now and it wasn't until a couple of months ago when a Dr called his condition PFFD. He will be having surgery in a week and I'm extremely nervous. His Dr. has been very informative about everything they are going to do but just to know that your baby is having surgery and he will be in pain drives my anxiety level off the charts.
I would love to talk to anyone that has this condition or to parents that have children with PFFD. Please email me

Orlando Fl