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Benefit/risk balance of prone positioning as first line treatment for upper airway obstruction in Robin sequence
Pauline Adnot1, Nancy Vegas2, Laurianne Coutier3,4
1General Pediatrics and Infectious Diseases Unit, AP-HP, Hôpital Necker-Enfants Malades, 149 Rue de Sèvres, 75015, Paris, France. Pauline.adnot@aphp.fr.
Insights
Sudden Infant Death Syndrome (SIDS) is not more common in infants with Robin sequence (RS) than in the general population. Prone positioning, a treatment for RS, may be safely used with caution, despite its association with SIDS risk.
Area of Science:
- Pediatric Medicine
- Rare Diseases
- Public Health
Background:
- Robin sequence (RS) involves airway obstruction due to retrognathia and glossoptosis.
- Prone positioning (PP) is a common treatment for RS, but carries a risk of Sudden Infant Death Syndrome (SIDS).
Purpose of the Study:
- To analyze the incidence of SIDS in infants with RS in France over 30 years.
- To clarify the benefit-risk balance of prone positioning for infants with RS.
Main Methods:
- Data analysis from the French national SIDS registry.
- Survey of French national RS reference centers.
- Examination of national cause of death data (CépiDc).
Main Results:
- One SIDS case in an RS infant occurred while awake and in the back position in the last 10 years.
- RS centers reported only 2 SIDS cases among approximately 3000 followed patients over 30 years.
- The proportion of SIDS deaths in the RS population was lower than in the general population.
Conclusions:
- SIDS is not more frequent in the RS population compared to the general population in France.
- Prone positioning may be considered for selected RS patients with careful monitoring due to its benefits.
Abstract:
Robin sequence (RS) is a rare condition associating retrognathia and glossoptosis causing upper airway obstruction. For half of the teams, prone positioning (PP) is the first-line treatment considering the benefit experienced on breathing, sleep, and neurodevelopmental outcome of infants with RS. However, this strategy is debated because of the risk of sudden infant death syndrome (SIDS) associated with PP. This study analyzed the occurrence of SIDS in children < 1 year old with RS during the last 30 years in France to clarify the benefit/risk balance of PP. We gathered data from the French national registry for SIDS. We also collected responses to a survey on SIDS sent to all French national RS reference centers for rare diseases. Finally, we collected data from the national epidemiologic database for causes of deaths (CépiDc). During the last 10 years, the French registry for SIDS documented 1 case of SIDS in a child with RS who died while awake in the back position. Among about 3000 children followed during the last 30 years, the survey to RS centers identified 2 cases of SIDS. Regarding CépiDc data, the proportion of SIDS cases among all causes of death in the RS population was lower than in the general population.
Conclusion:
In this preliminary work, SIDS was not more common in the RS population than in the general population in France, even if most patients are treated with PP. Taking into account the benefits of this therapy, PP may be proposed in selected patients, with strict cautions.
What Is Known:
• Prone sleeping is a well-known risk factor of SIDS. • In approximately 50% of centers worldwide, prone positioning is used as the first-line treatment of upper airway obstruction in children with Robin sequence.
What Is New:
• No child with Robin sequence died from SIDS while in the prone position in the last 10 years in France (SIDS French registry). • The occurrence of SIDS among all causes of death for children with Robin sequence is not higher than in the general population in France even if prone positioning is the first-line treatment.
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