My son Cody was born July 29, 1999, with amniotic band syndrome affecting his left hand. He had a normal thumb, but all the other fingers looked like a mitten. Cody was my second child, the pregnancy was normal up until the 4th month. When I went to my first ultrasound, the doctors said they saw something floating in the amniotic sac, and at that time said there was nothing to worry about it had not attached itself and everything at that time looked fine. The whole 10 fingers ten toes thing. They did schedule me to come back again the next month, same thing at this appointment it is still there, but not attached, went back a third time, about a month before his birth, for the third time, still they did notice it but once again fine. From the very first appointment, I was nervous, but at the same time, was comforted by the doctors saying everything was fine. So after 3 ultrasound’s I was confident that he was going to be completely healthy.
The day Cody was born, I was induced, it was a short labor, and when he was born, he was also whisked away, his father was in the labor room, and kept saying “something is wrong with his hand” The doctor said it looks like he just has it in a fist. At this time I began to get very nervous and scared. I was laying there, not able to get up, and no one was telling me what was going on with my baby. I did not get to hold him, and was not able to see him. They took him to the NICU, and I was not able to see him until late that night. So many emotions were going on, I could not believe that with all of these ultrasound’s, that no one seen this. The pediatrician which came to the hospital, said to me, well at least he has a functional thumb. At that time, I knew that it was going to be that last time I saw this doctor. I just thought it was the dumbest thing to say to someone going through this.
Almost immediately I began looking for a reconstructive hand surgeons. I finally found the doctor which I knew was the best. Dr. Peter Barre, in Dayton, OHIO.
Cody underwent his first surgery when he was 3 months old, releasing the index finger, he was in a cast. I think now, that was the easiest surgery. At this surgery, the doctor was really able to see what the options where. Because with his hand the top of it looked like a mitten with slits where the fingers where supposed to be. So, this surgery was a relief to now, because we were able to see what the next steps where going to be. He did lose the top of his middle finger, to be able to release the index finger, his index finger also had a pin in it.
His second surgery was when he was 9 months old, they release the ring finger and pinky. This one was hard, because he was crawling now, and I thought this would delay him. To my surprise, the first of many, this did not slow him down, he just improvised, he then started crawling like “an army man”. He also had a skin graft during this surgery.
He did not have any more surgeries until just this March 2004. The doctor wanted the hand to get a little bit bigger, this was for some reconstruction surgery. He only has a nail on the index and ring finger. This surgery was more emotional than any other. Because at this time he was 4 1/2 and was well aware of what was going on, but he was excited about getting a green cast like the “Hulk” he just got his cast off, and things are looking better. He is able to use all of his fingers.
We have never been ashamed or tried to hide his hand. I think that is why up until recently he really realized that his left hand is different. I think the hardest thing was a few months ago, he looked at me, and said that he wanted a new hand. He has been so strong throughout this whole thing. I am so proud of him, nothing holds him back. He has made me really appreciate life, and has shown me so much. I would love to talk to any other parents out there, going through the same thing. I just found this website, and I can not tell you how thankful I am.