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Congenital Central Hypoventilation Syndrome (CCHS)

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: VanderlaanM@Hartwick.Edu

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Our publications (online, email, print, or any other communications or phone contacts) do not provide medical advice or a professional service. No one including the publisher, editors, editorial advisors, or the authors of any material in this site is engaged in providing any medical or professional advice or services through the publication, distribution or sale of articles, books, materials, tests or quizzes, on this site or in communications by phone, email, or any other means. Persons with suspected or diagnosed sleep apnea syndrome or any sleep disorder or other condition including COPD discussed in this site should consult with a physician and other qualified professionals for advice concerning their own treatment.