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There is a support group for families of children suffering from Congenital Central Hypoventilation Syndrome. This syndrome is discovered within the first year of life. Babies present with aphnea spells, or cor pulmunare(right-sided heart failure). They consistently have desaturation (Oxygen saturations less than 90%) during sleep. These children consistently do not breathe adequately enough during sleep. When this happens, high blood CO2's causes enlarged right sided heart failure. This syndrome is treated by trachestomy, positive pressure ventilation, pacing, more recently nasal bi-level postive pressure ventilation or combination of above. Our support group has a regular newsletters, communicate via Internet phone, organize meetings, publish a CCHS physicians directory, CCHS family directory and more.
CCHS Family Support Network
Congenital Central Hypoventilation Syndrome (CCHS) Family Support Network 71 Maple Street Oneonta, NY 13820 (607) 432-8872 Email: [email protected]
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