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Hi Everyone

My name is . My daughter is 4 1/2 years old and was

just diagnosed RSS in October of 2003. In June of 2003 one of the

pediatricians in her group heard a heart murmur (for the first time)

during an ear infection visit. We were scheduled to go to a local

hospital to have an EKG performed, however, due to time frames we were

hooked up with a pediatric caridiologist who gave us horrible news

that day which was that she had a very large hole in her heart. We

tried to have the hole closed via a catheter, however, the hole was

too large and underwent open heart surgery at Columbia

Presbyterian Hospital in New York in November of 2003. Between the

first visit with her cardiologist and her open heart surgery her

cardiologist asked if she was ever seen by anyone for her size and had

her seen by a geneticist prior to her surgery who diagnosed RSS and

said to follow up with an endocrinologist. Her pediatrician at her 4

year visit (a month and a half after her surgery) recommended an

endocrinologist Dr. Lawrence Silverman (who will be at the Magion

Foundation Convention this year) confirmed RSS and discussed the

possibility of growth hormone.

has been to her cardiologist on June 11 who said that she does

not have to come back for a follow up visit for another 3-5 years.

She currently weighs 29 pounds and is 36 inches tall.

After being diagnosed and reading some information a lot of her first

year of life makes sense to me now. was a poor eater and of

course poor weight gain and as an infant ate every two hours and only

took in 2 ounces. She was seen by a gastrointerologist, had blood

work done, a sweat test performed and no one ever picked up on anything.

This is all very new to me and my husband and our families and we are

not sure where to begin, what questions to ask, etc.

Thank you for providing information and wonderful pictures.

Briggs