Ectrodactyly

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[deleted account]

Yep, my beautiful boy has ectrodactyly, or clefts, in both hands and feet. He's 3 now, had surgery at 10 months old and is perfect. Most people don't even notice his missing middle fingers, and he is developing quite normally- the little guy impresses me every day (drives me nuts, too.) But, it was a rough start!

Tawni - posted on 05/13/2011

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Hello, I am not new to COM but was anaware of this portion. My son is almost 7, and was born missing his middle finger on one hand. I was actually trying to find a how to" on teaching him how to tie his shoes. He does great with everything else, scissors are a bit tough, but we found somewhere that sells special ones. His handwriting is a little messier but I figure he will learn how to neaten up on his own with that. I have really been wondering how to do the shoe tying though, and would love for him to have shoes with no velcro. gotta run now, but will def be returning.
So glad I found this area!!

Susan - posted on 04/05/2011

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I'm late responding, but if you have any questions/need any help please feel free to contact me. I have a 15 yr old and we've been involved in a genetic study and for biology he's researched his own genetics and found out lots about ectrodactyly. We've learned a lot in general along the way.

Susan - posted on 04/05/2011

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I'm late responding, but if you have any questions/need any help please feel free to contact me. I have a 15 yr old and we've been involved in a genetic study and for biology he's researched his own genetics and found out lots about ectrodactyly. We've learned a lot in general along the way.

Sue - posted on 01/31/2011

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Hi, my little boy has both ectrodactyly and syndactyly in his left hand. His thumb and pointing finger are fused, and his middle and ring fingers never grew out. So he has what we call his "big thumb" and a pinky. He turned 10 on September 9th, and is the greatest joy in my life. I sometimes think that what he ended up missing in physical development, was compensated in spades with is his giant heart and amazing sense of humor. Our very first hand specialist told us the most valuable information that we ever received: how we handle his disability, is more important than anything else in his life. He was born with his special hand, and doesn't know any better. He learned to tie his shoes, zipper his jacket, and one day he will be able to handle the zipper and button on pants (God Bless Land's End for big boy pants with elasticized waists). Our "can-do" attitudes have more of an impact on him than the simple condition of his hand. So we encourage him to try the trumpet in a couple of years, we root for him in soccer, and we love love love that he is interested in becoming a Herpetologist when he grows up. There is so much in life that is not totally dependent on the condition of one hand...good luck!

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Angie - posted on 07/23/2012

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My baby was born without his middle finger on rt hand. It also "V"s a good portion of the way down. Anyone else have this Abend been thru surery? Thanks

[deleted account]

I don't, but I'm familiar with polydactyly in children I've worked with. 



There is an online support group for ectrodactyly here: http://health.groups.yahoo.com/group/Ect...



Another about half that size for ectrodactyly and other structural abnormalities of the hands: http://health.groups.yahoo.com/group/unu...



One more for parents of children with polydactyly, syndactyly and ectrodactyly: http://groups.yahoo.com/group/PSE_suppor...



Best to you!

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