Being told your child needs a breathing machine at night is a lot to take in. Most parents picture intensive care. In reality, home non-invasive ventilation is usually a small bedside device and a mask, and after a settling-in period it becomes part of the bedtime routine, like brushing teeth. This guide covers what I usually go through with families when we start.
CPAP and bilevel NIV — what is the difference?
- CPAP (continuous positive airway pressure) delivers one steady pressure that holds the airway open. It is mainly used for obstructive sleep apnoea when surgery is not suitable or has not fully worked.
- Bilevel NIV gives a higher pressure when the child breathes in and a lower one when they breathe out. It helps weak breathing muscles move more air, so it is used for neuromuscular conditions such as SMA and Duchenne muscular dystrophy, central hypoventilation and some lung and chest wall conditions.
Getting the mask right
The mask decides whether NIV succeeds. A good fit is comfortable, does not leak into the eyes and does not press hard on the bridge of the nose.
- Nasal masks and nasal pillows suit children who breathe through their nose and keep the mouth closed.
- Full-face masks are needed for mouth breathers, but carry a higher risk of pressure marks and must be used with care in children who cannot remove them.
- Growth changes fit. Masks should be re-checked at every review and whenever marks or leaks appear.
The first few weeks
Very few children accept NIV on the first night. What helps most:
- Practise with the mask during the day, while watching a favourite show or reading, without the machine running at first.
- Let younger children put the mask on a teddy or doll.
- Start with short periods at bedtime and build up gradually, following the plan agreed with your team.
- Use praise and a simple reward chart. Keep the tone calm and matter-of-fact.
- Report problems early. Leaks, a dry mouth, bloating or waking distressed can usually be fixed with a change of mask, humidification or settings.
Looking after skin and equipment
- Check the bridge of the nose, cheeks and forehead every morning for redness.
- Wash the face before putting the mask on, and avoid heavy creams under the cushion.
- Clean the mask daily with mild soap and water and let it air-dry.
- Use distilled or cooled boiled water in the humidifier as instructed, and replace filters and tubing on schedule.
Living with NIV in the UAE
Indoor air conditioning dries the airway, so heated humidification is often worth using. Keep equipment away from AC vents and direct sunlight. Ask your equipment provider about battery backup, keep your provider's 24-hour number on the device, and let your local emergency department know your child uses home ventilation.
Indoor air conditioning dries the airway, so heated humidification is often worth using. Keep equipment away from AC vents and direct sunlight. Ask your equipment provider about battery backup, keep your provider's 24-hour number on the device, and let your local emergency department know your child uses home ventilation.
Travelling with a ventilator
- Contact your airline well before travel. Most require medical forms and battery details for devices used on board.
- Carry the device, mask and a spare in hand luggage, never in checked bags.
- Bring a letter summarising the diagnosis, settings and emergency plan, plus plug adaptors and extension leads.
- For long journeys or altitude, ask whether your child needs an oxygen assessment before flying.
Follow-up
NIV is reviewed regularly with clinic visits, downloads from the device, and repeat sleep studies or overnight oxygen and carbon dioxide monitoring. Settings often need to change as children grow, as their condition changes or after a significant illness.
Seek urgent medical help if your child: is breathing harder than usual despite NIV, has lower oxygen levels than normal, is unusually drowsy or difficult to wake, or cannot manage without the machine when they normally can.
Clinical references
- Amaddeo A, Frapin A, Fauroux B. Long-term non-invasive ventilation in children. Lancet Respir Med 2016;4:999–1008. View source →
- Hull J, Aniapravan R, Chan E, et al. British Thoracic Society guideline for respiratory management of children with neuromuscular weakness. Thorax 2012;67 Suppl 1:i1–40. View source →
Frequently asked questions
What is the difference between CPAP and NIV for children?
CPAP gives one continuous pressure to keep the airway open and is mainly used for obstructive sleep apnoea. Bilevel NIV gives higher pressure on breathing in and lower on breathing out, helping weak breathing muscles, so it is used in conditions such as SMA and Duchenne muscular dystrophy.
How long does it take a child to get used to NIV?
It varies, but most children settle within a few weeks with daytime practice, gradual build-up at night and early attention to mask fit and comfort.
How do I stop the NIV mask marking my child's face?
Check fit regularly, avoid over-tightening straps, wash the face before use, and check the skin every morning. If marks persist, a different mask style or size is usually needed.
Can my child fly with a home ventilator?
Usually yes, with planning. Contact the airline early, carry the device in hand luggage with enough battery power, and take a medical letter with settings and an emergency plan.
About this information. This article is for general education and does not replace an assessment by a qualified doctor who has examined your child. If you are worried about your child’s breathing right now, contact your child’s doctor, go to the nearest emergency department, or call 998.
