For Parents
Pauses in breathing during sleep, sleep studies, breathing support – what parents should know.
Some children with craniofacial conditions have difficult breathing or pauses in breathing during sleep (obstructive sleep apnoea), because the upper airways are narrower. Signs include loud snoring, pauses in breathing, restless sleep or laboured breathing. An assessment – often in a sleep study – helps to gauge the severity. Depending on the findings, the range extends from observation and positioning through breathing support to surgery; the care team decides individually.
With some conditions the lower jaw, the midface or the throat are shaped so that the upper airways are narrower. During sleep, when the muscles relax, breathing can worsen as a result. This is called obstructive sleep apnoea.
This is particularly relevant with a small or set-back lower jaw (e.g. Robin sequence) and with syndromic forms involving midface underdevelopment (e.g. Apert, Crouzon or Pfeiffer syndrome). Extent and course vary widely.
If you notice pauses in breathing, gasping or clearly laboured breathing, or if your infant turns blue while feeding, contact your care team or paediatrician promptly. In acute breathing difficulty, use emergency care.
To gauge the severity, a sleep study (polysomnography or simplified monitoring) is often carried out. Among other things, breathing, oxygen saturation and sleep are recorded. The result helps the team to plan the next steps together with you.
In infants with a known risk, monitoring oxygen saturation may be sensible for a time. Whether and to what extent is decided by the care team.
The range is broad and graded individually. Possible elements – depending on cause and severity – are:
In rare, severe cases where other measures are not enough, a temporary opening in the windpipe (tracheostomy) can secure breathing. This decision is made very carefully and individually within the interdisciplinary team together with the parents, and is often not permanent.
That certain craniofacial conditions carry an increased risk of obstructive sleep apnoea and that assessing the severity is important is well established.
The order and choice of measures – for instance when distraction versus breathing support is preferred – are weighted differently depending on centre and situation.
Which strategy gives the best long-term results is the subject of ongoing research and depends heavily on the individual case.
We advise parents and professionals – confidentially and in your language.
Get in touchThe upper airways are temporarily narrowed or blocked during sleep, leading to difficult breathing or pauses in breathing. In children with craniofacial conditions this can occur more often. An assessment helps to gauge the severity.
Possible signs are loud snoring, visible pauses in breathing, gasping, restless sleep, increased sweating and daytime tiredness. In infants, feeding problems or turning blue can occur. Such observations should be assessed medically.
CPAP is breathing support that provides a gentle positive pressure through a mask and so keeps the airways open. Whether CPAP or another measure is sensible depends on the findings and is decided by the care team individually.
Only in rare, severe cases where other measures do not sufficiently secure breathing. The decision is made very carefully within the interdisciplinary team together with the parents and is often temporary. It does not replace individual medical assessment.
A sleep study (polysomnography) or simplified monitoring is often recommended to assess breathing and oxygen during sleep. Whether and in what form is decided by the care team.