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\begin{document}

\title{Decannulation in congenital central hypoventilation syndrome}



\author[1]{Benjamin Dudoignon}%
\author[1]{Zina Ghelab}%
\author[1]{Plamen Bokov}%
\author[1]{Natacha Teissier}%
\author[1]{Delphine Micaelli}%
\author[2]{Maxime Patout}%
\author[1]{Aurelie Hayotte}%
\author[1]{Stéphane Dauger}%
\author[1]{Christophe Delclaux}%
\affil[1]{Assistance Publique - Hopitaux de Paris}%
\affil[2]{Hopital Universitaire Pitie Salpetriere Service des Pathologies du Sommeil}%


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  \date{June 03, 2024}


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\begin{abstract}
Rationale: Patients with congenital central hypoventilation syndrome
(CCHS) require long-term ventilation to ensure gas exchange and to
prevent deleterious consequences for neurocognitive development. Two
ventilation modes may be used for these patients depending on their
tolerance, one invasive by tracheostomy and the other noninvasive (NIV).
For patients who have undergone a tracheostomy, transition to NIV is
possible when they meet predefined criteria. Identifying the conditions
favorable for weaning from a tracheostomy it critical for the success of
the process. Objective: The aim of the study was to share our experience
of decannulation in a reference center; we hereby describe the modality
of ventilation and its effect on nocturnal gas exchange before and after
tracheostomy removal. Methods: Retrospective observational study at
Robert Debr\selectlanguage{ngerman}é Hospital over the past 10 years. The modalities of
decannulation and transcutaneous carbon dioxide recordings or
polysomnographies before and after decannulation were collected.
Results: Sixteen patients underwent decannulation following a specific
procedure for transition from invasive to NIV. All decannulations were
successful. The median age at decannulation was 12.6 {[}9.7; 15.0{]}
years. Nocturnal gas exchange was not significantly different before and
after decannulation, while expiratory positive airway pressure and
inspiratory time increased significantly. An oronasal interface was
chosen in two out of three patients. The mean duration of hospital stay
for decannulation was 4.0 {[}3.0; 6.0{]} days. Conclusion: Our study
underlines that decannulation and transition to NIV are achievable in
CCHS children using a well-defined procedure. Patient preparation is
crucial to the success of the process.%
\end{abstract}\selectlanguage{ngerman}%



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