Cornelia de Lange Syndrome....

  1. Anyone familar with this syndrome? I took care of a child today that is afflicted with it and had never heard of it before. The child is 2. Very heart-wrenching case....


    Here is a link....

    http://www.cdlsusa.org/
    Last edit by deespoohbear on Feb 9, '03
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  2. 7 Comments

  3. by   cbs3143
    One of my patients when I was in nursing school had Corneila de Lange Syndrome. I haven's seen another case since that time. he was in his late teens as I recall, but had the body of a six year old and very limited intellect. He had the heavy eyebrows that went all the way across his lower forehead. The only sound that I recall him making was a sort of fart sound with his mouth. He had very limited intellect, but his mother seemed to be able to communicate with him somewhat. As I recall, he also had some sort of deformity in both hands. I haven't thought about that little guy in a long time.


    Chuck
  4. by   deespoohbear
    This little tyke could only groan and cry. She had the most beautiful eyelashes....totally dependent on others for her care. So sad. Said the infant brother is showing signs of it too....she also has CHF and seizures. It is really a sad case....Makes me thankful for the healthy, perfect children I have.....I am so blessed...
  5. by   researchrabbit
    I had a patient long ago who had a very mild form of this disorder; the eyebrows, eyelashes, and body hair were what made the physician suspect CdL, and she was eventually given that diagnosis. Unfortunately, mom and dad had problems of their own; in a supportive situation, this child probably would have approximated a normal life. Don't know what happened to her.
  6. by   semstr
    yes, I took care of 2 children in fact. The boy was worse, he had seizures all the time and a pallatum cleft (sp?). No possible way, for us nurses, to communicate with him, although in this case too, his mother was able to.
    The girl was a milder "case", she was very small, could talk, well grunt more, and had very long bodyhair.
  7. by   Mattigan
    only one, he is probably 14 or so now. His mom works at the hosp.. All the body hair, gorgeous eyelashes, big eyebrow across his forehead.. His arms have deformities.-stop at elbow with thumbs. He is non verbal , seizures and lots of health problems ,however, mom was told at birth his life expectancy was a year at best.
  8. by   P_RN
    I have never heard of this sx, but my adopted niece's birth sister looked just like these pictures! Her mother said it was thalidomide!! How sad! I don't know what happened to the child, and I really don't want to investigate it. Oh poor children.
  9. by   MomNRN
    One of my students has CDL. One of the defining aspects of CDL is the physical characteristics that make all children very similar looking. She also has a kidney disorder, can't remember exactly what, but she is very susceptible to infections. She is on a prophlactic Bactrim.

    She is now 18 years old. She is non-verbal, but somewhat independent. Her family has made their home accessible and safe.

    She gets along fairly well.

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