Congenital Central Hypoventilation Syndrome (Ondine’s Curse): Clinical Case

Background. Congenital central hypoventilation syndrome (CCHS), or Ondine’s Curse, is rare, incurable and life-threatening disease characterized by autonomic nervous system disorders, it manifests with disability to maintain ventilation function during sleep. Sensitivity to hypoxia and hypercapnia i...

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Main Authors: Teimur S. Adylov, Evgenii V. Shestak
Format: Article
Language:English
Published: "Paediatrician" Publishers LLC 2023-08-01
Series:Вопросы современной педиатрии
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Online Access:https://vsp.spr-journal.ru/jour/article/view/3268
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author Teimur S. Adylov
Evgenii V. Shestak
author_facet Teimur S. Adylov
Evgenii V. Shestak
author_sort Teimur S. Adylov
collection DOAJ
description Background. Congenital central hypoventilation syndrome (CCHS), or Ondine’s Curse, is rare, incurable and life-threatening disease characterized by autonomic nervous system disorders, it manifests with disability to maintain ventilation function during sleep. Sensitivity to hypoxia and hypercapnia is reduced in case of CCHS, thus, it leads to recurrent episodes of deep apnea. The world literature describes just over 1000 cases of this disease. Clinical case description. An infant born at 37th week of gestation, weight of 3330 g, had episodes of apnea and hypercapnia from the first day of life. CCHS was suspected by the 28th day of life after excluding other causes of respiratory disorders, and it was genetically confirmed by the 43rd day of life — pathogenic variant of PHOX2B gene was revealed. Mechanical ventilation has been initiated by the age of 1 month after disease worsening. Analysis of CCHS cases published in Russian-language medical literature was performed. Typical symptoms and timing of their manifestation, as well as the time before correct diagnosis were mentioned. Conclusion. Symptoms that can be suggestive of CCHS presence early after birth and can urge to perform all the necessary genetic testing that are crucial for timely treatment onset and for minimizing the negative effect of hypoxemia and hypercapnia on the child are described.
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series Вопросы современной педиатрии
spelling doaj-art-61d6ea1806dd47d5a965855cbdcc55632025-08-20T03:21:55Zeng"Paediatrician" Publishers LLCВопросы современной педиатрии1682-55271682-55352023-08-0122431131810.15690/vsp.v22i4.25922116Congenital Central Hypoventilation Syndrome (Ondine’s Curse): Clinical CaseTeimur S. Adylov0Evgenii V. Shestak1Ekaterinburg Clinical Perinatal Center; Ural State Medical UniversityEkaterinburg Clinical Perinatal Center; Ural State Medical UniversityBackground. Congenital central hypoventilation syndrome (CCHS), or Ondine’s Curse, is rare, incurable and life-threatening disease characterized by autonomic nervous system disorders, it manifests with disability to maintain ventilation function during sleep. Sensitivity to hypoxia and hypercapnia is reduced in case of CCHS, thus, it leads to recurrent episodes of deep apnea. The world literature describes just over 1000 cases of this disease. Clinical case description. An infant born at 37th week of gestation, weight of 3330 g, had episodes of apnea and hypercapnia from the first day of life. CCHS was suspected by the 28th day of life after excluding other causes of respiratory disorders, and it was genetically confirmed by the 43rd day of life — pathogenic variant of PHOX2B gene was revealed. Mechanical ventilation has been initiated by the age of 1 month after disease worsening. Analysis of CCHS cases published in Russian-language medical literature was performed. Typical symptoms and timing of their manifestation, as well as the time before correct diagnosis were mentioned. Conclusion. Symptoms that can be suggestive of CCHS presence early after birth and can urge to perform all the necessary genetic testing that are crucial for timely treatment onset and for minimizing the negative effect of hypoxemia and hypercapnia on the child are described.https://vsp.spr-journal.ru/jour/article/view/3268central hypoventilation syndromenewbornondine’s curse
spellingShingle Teimur S. Adylov
Evgenii V. Shestak
Congenital Central Hypoventilation Syndrome (Ondine’s Curse): Clinical Case
Вопросы современной педиатрии
central hypoventilation syndrome
newborn
ondine’s curse
title Congenital Central Hypoventilation Syndrome (Ondine’s Curse): Clinical Case
title_full Congenital Central Hypoventilation Syndrome (Ondine’s Curse): Clinical Case
title_fullStr Congenital Central Hypoventilation Syndrome (Ondine’s Curse): Clinical Case
title_full_unstemmed Congenital Central Hypoventilation Syndrome (Ondine’s Curse): Clinical Case
title_short Congenital Central Hypoventilation Syndrome (Ondine’s Curse): Clinical Case
title_sort congenital central hypoventilation syndrome ondine s curse clinical case
topic central hypoventilation syndrome
newborn
ondine’s curse
url https://vsp.spr-journal.ru/jour/article/view/3268
work_keys_str_mv AT teimursadylov congenitalcentralhypoventilationsyndromeondinescurseclinicalcase
AT evgeniivshestak congenitalcentralhypoventilationsyndromeondinescurseclinicalcase