A Bit About Jess

A Brief History:

Jessica was born full-term, via emergency c-section, weighing 4 lbs. 3 oz. and was 17″ long. She stayed in the NICU for one week but had no medical complications. Because of her small size and other characteristics, a syndrome was suspected and at 2 months old she was diagnosed with Cornelia de Lange Syndrome (CdLS).


Jessica has been very healthy. Her main medical issue is gastroesophageal reflux. She had a minor  Ventricular Septal Defect (VSD), which closed on its own by age 2.  At about 14 months old she had surgery to correct esotropia (lazy eye muscle).


As with most children with CdLS, Jessica’s speech is extremely delayed.  She began using sign language between the ages of 1 and 2.  She now speaks in short sentences and uses a few signs for emphasis.

Enunciation is difficult for her and she can be hard to understand.  She becomes a bit shy around people she doesn’t know and often won’t speak much or respond to questions.

She loves to mimic others. Interestingly, though she has great difficulty forming words/sentences when she is speaking directly to someone, she speaks quite clearly when engaged in pretend play and imitating things she has heard others say.

Developmental Milestones:
Rolling – 4 – 8 months
Crawling – 10 1/2 months
Sitting without support – 15 months
Cruising the furniture – 16 1/2 months
Climbing stairs – 21 months
WALKING – 23 months
Propelling on a ride-on toy – 2 1/2 yrs
Throwing/catching a ball – 7 yrs

Jessica’s Height & Weight:
Birth: 4 lbs. 3 oz.; 17″
Age 1: 12 lbs.; 24″
Age 2: 18 lbs.; 28″
Age 3: 21 lbs.; 31″
Age 4: 25 lbs.; 34″
Age 5: 32 lbs.; 38″
Age 6: 37 lbs.; 41″
Age 7: 46 lbs.; 43″ *
Age 8: 41 lbs.; 45″
Age 9: 45 lbs.; 46″
Age 10: 50 lbs.; 47″
Age 12: 82 lbs; 48″*

*large weight gains due to medication




  1. Hi! Dropping by to say hello! I’m enjoying the photos (especially the conference which we didn’t get to attend) and also just seeing how Jessica has grown. This page by itself is quite informative!
    ~Bianca’s mom

  2. I had never heard about this syndrome before. Thanks for sharing.

  3. i’m new to all this, my daughter was just diagnosed. thank you thank you thank you for this page!!! i’m sure you are familiar with the awful prognosis people will give, you have given me so much hope by posting this
    ~Emma’s mom

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