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A couple months ago my youngest daughter was born with a congenital birth defect of her hand. She's missing her index, middle, and ring fingers on her right hand. As of today it's been diagnosed as "transverse failure to form". Which basically means the fingers just didn't form for whatever reason. She's otherwise perfectly healthy and has the ability to form a pincher grip between her pinky and thumb -- which may end up enabling her to have a considerable amount of function with the hand.
I started this blog to chronicle her treatment as well as to hopefully act as a resource for others looking for information on this condition. Through research and the help of family, friends and colleagues we were eventually able to find several helpful online resources and communities. But initially the combination of the rarity of the condition (we're confident our pediatrician hadn't dealt with it before and he has been practicing pediatrics for over 20 years) and the difficulty finding information on a condition without an expert diagnosis was frustrating for my wife and I. I hope this blog can help ease the information flow (and corresponding anxiety) for anyone else facing this situation.
2 comments:
My dauhgter was born with the same birth defect that your child was born with. I thought my daughter was the only one born with this birth defect because no one in my family nor her father families has the condtion that she has. I am so glad that you posted the info on the net because now I know I am not alone. Thank You So Much!
I'm glad to hear the site was helpful. Until my wife and I were able to find some online resources like limbdifferences.org we were just as concerned as you about how difficult it was to find anyone else with a similar condition. If we can be of help please feel free to email us directly at failuretoform@gmail.com
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