Thursday, May 6, 2010

Information about the EEC-Syndrome of our son

Operation SmileImage via Wikipedia

We wanted to share some information about the EEC-Syndrome (Ectrodactyly-ectodermal-dysplasia-cleft-Syndrome) of our son as there is a high possibility that he might have this kind of genetic disorder.

I bet you know some persons who "suffer" from the same condition. Mainly these are the persons with cleft lips/palate which gets to be operated while they are babies or young toddlers.

Timmy doesn't have the cleft lips but he has only nine fingers and they are split in the middle (imagine a lobster's claw).

As we will go back to Germany in a few weeks, we have to make several decisions on who shall perform the surgeries and if we should perform the surgeries as there are always risks for such small babies.
The information about the surgery which we got from the Hospital in Kuala Lumpur looks like this:
  • several hours for each operation
  • at least 2 or 3 operations for each hand
  • healing process takes several weeks
We will publish tomorrow a video from one of the biggest EEC-Syndrome self-help groups in America.

There you can see how the kids hands, mouth and feet will look like before the surgery, after the surgery and during the healing process.

(Just saw that Jessica Simpson seems to be an ambassador for Kids with cleft lips and palate. She is supporting "Operation Smile" a foundation who provides free surgeries for those kids.)

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1 comment:

  1. Ohh.. didnt know this about Timmy.. hope everything works out for him Martin..


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