Sunday, February 22, 2009

EEC-Syndrome: Our nine-finger son

Our cute son Tim Johannes
The EEC-Syndrome is a complex genetic disorder which can influence most of the body parts. Most common are the cleft lips/palate, there a gap on the upper lip/mouth will occur. Our son is NOT affected by cleft lips/palate!

The visible appearance for our son is the 'claw-like' fingers and the missing of fingers on one or both hands/feet.

Usually two fingers are combined and then it is followed by a gap and the other two or three fingers are a separate pair/triplet like you can see on the pictures from our son Tim Johannes.

This disorder of the skin/bones has no effects on his future development (physically, intellectually, mentally). It has mostly only to do with appearance disorder like we describe it below the picture.

Left hand with five fingers, the gap is between the middle and the pointing finger

Right hand with four fingers and gap between the ring finger and the pointing finger, the middle finger seems to be missing

Other features in connection with the EEC-Syndrome could be in the future:
  • missing or abnormal teeth
  • hearing loss
  • kidney problems
Usually gene or chromosome tests are made to see which kind of features could appear in the future because some of the features are already localized in the chromosomes.

At the moment we have to wait for the results of these tests. The doctors said we should get them at latest by end of April. We will keep you updated.

Do you have also a kid with some health problems?
Share your thoughts about it with us in the comments!

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  1. Congratulations on the birth of your son (I know this is an old post; I read on your blog that he is 8 months old, and counting?)
    My first grandson was born--out of the blue, no genetic history--with Down Syndrome. He was my daughter's first child. He is 9 now, has a great personality, is very social, and doing wonderfully, thank G-d.
    I wish the best for you and your son. How is he doing now? I hope there are no "teeth, hearing loss nor kidney problems" in the future for him...

  2. Martin- I just came here from your list of posts. I had no idea Timmy had some problems. I know they do amazing things with hand surgery now. I have a friend who may have the same or similar problem. He was adopted as a baby... is now in his 30's. Most people don't even realize that his hands are odd. He just does everything that everyone else does. Since he's not self-conscious, no one else is either. Conrad has very small hands with fingers missing and only one joint instead of two on the short ones he does have.

  3. I stumbled across your blog as i was dropping EC's. I never new there was such a syndrome! All I was familiar with was the cleft palate/lip. Thanks for sharing.


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