Here are some internet links where one can learn about some of the issues around Katya's challenges and her care.

About Trisomy 13:

Trisomy 18/13/etc. Guide for Health Professionals (via SOFT)

Explanation of trisomy 13 as found on an overseas SOFT chapter website.

"Trisomy 13 Facts" from the SOFT Database

SOFT Home Page (i.e., Support Organization for Trisomy 18, 13, and Related Disorders)

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About Cardiac/Surgical Issues:

Congenital Heart Defects in Children Fact Sheet at American Heart Association website

Tetralogy of Fallot Information at HeartCentreOnline.com

Article on Nonblood Treatments at WTS's JW website

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Medical Papers Search Sites:

National Library of Medicine Medline Database (via NCBI PubMed)

National Organization for Rare Diseases