Our 13 month old daughter Charlie was born 6 weeks prematurely, weighing 7lbs 1 oz. Since birth she has only gained 2lbs, which has just occured since February 2009. For 7 months, July 2008-Feb 2009, she consistently weighed 7lbs 12oz. She is very "skeletal" in appearance with no fat mass and hanging skin in areas such as her thighs and arms.
In June of 2008, Charlie underwent all of the "normal" rounds of testing for babies that suffer from poor weight gain. As we traveled from specialist to specialist, each doctor had a series of tests that they all needed to do. As each test was done, all came back "normal"
Since Charlie was 2 months old, she has seen specialists in Gastroentrology, Nuerology, Genetics, Endorcronology, Cardiology, Opthamology, Ear, nose, Throat, Physical and Occupational therapy, and Developmental therapy. We visit the hospital more than most families go out to dinner with sometimes very lengthy stays.
The hardest part of this all is that we still do not have any answers as to why Charlies does not gain weight. We currentlly do not have a diagnosis aside from Severe Failure to Thrive. Her current developmental level is approx 5-6 mos.
Some of her symptoms are:
Failure to thrive
PFO
Heart Murmer
Reactive Airway Disease
Birthmark under arm
Lazy/ drifting eye
Small ear canals
Low muscle tone

My hope as her mother is to hopefully find an answer to Charlie's condition. Hopefully by sharing our story, we may become closer to finding the answers to help our baby girl. As of right now, we take each day as they come without expectation. Charlie also has 3 amazing siblings, 2 brothers and 1 sister, who have been so patient and understanding through this last year.
Thank you for the opportunity to share our story with you.