Mask Ventilation/ Non-Invasive Ventilation (NIV)

This following pages set out important information for parents, carers and families regarding Mask Ventilation. This is a support for the breathing provided by a mask air tight on the face into which air is blown to better inflate the lungs and air passages.

This air is blown from a device known as a ventilator and at a pressure above room (atmospheric) pressure, so is known as positive pressure ventilation. It includes details of how mask ventilation works, the equipment, and how to contact us for further support.

What is mask ventilation?

Mask Ventilation, also known as Non-Invasive Ventilation (NIV), is where positive airway pressure is provided to the nose or mouth via a mask worn on the face. It is used to improve breathing for a variety of medical conditions, including obstructive sleep apnoea, tracheomalacia, some types of lung disease, some neuromuscular conditions and skeletal diseases.

Why does my child need ventilation?

It is likely that your child had a sleep study performed during an overnight visit to hospital where their oxygen and carbon dioxide levels, breathing pattern and heart rate were measured. This provided information about your child’s breathing during sleep and their sleep quality.

From the results of the sleep study, the doctor decided that your child might benefit from the use of ventilation which, when correctly used every night, should improve your child’s breathing, sleep quality and daytime symptoms.

The doctor will decide if your child needs Continuous Positive Airway Pressure (CPAP) or Bi-level Positive Airway Pressure (BiPAP)

What is CPAP?

CPAP stands for Continuous Positive Airway Pressure. It works by providing continuous positive pressure of air at the same level of pressure both when breathing in and breathing out. This keeps the airway open and prevents obstruction. This helps to prevent breathing difficulties and increases the level of oxygen in the lungs.

What is BiPAP?

BiPAP stands for Bilevel Positive Airway Pressure. It provides different pressure when breathing in (inspiratory positive airway pressure or IPAP) and breathing out (expiratory positive airway pressure or EPAP). The BiPAP machine also has a setting that maintains your child’s breathing rate by ensuring a minimum number of efficient breaths are taken in one minute. BiPAP can also help reduce the amount of work your child requires to breathe. This will help support the breathing muscles, improve the amount of oxygen in the lungs and remove waste gas (carbon dioxide) from the lungs.

CPAP or BiPAP is usually only needed at night time or during sleep.

What are the benefits of ventilation?

  • reduced sleep disruption and better sleep quality
  • treatment of narrowing or obstruction in the air passages and snoring
  • reduced daytime sleepiness
  • reduced frequency of morning headaches
  • improved daytime energy and concentration levels

How does ventilation work?

The ventilator blows room air at the prescribed pressures. The settings are usually determined after review of a sleep study supervised by a sleep physiologist[1] during an overnight stay.

The mask is held in place by straps or a mesh cap (headgear) to ensure a good seal around the nose and/or mouth. Oxygen can be added if the doctor feels your child needs it.

There are a range of different masks:

  • Nasal
  • Full face (cover the nose and mouth)
  • Total face (cover the whole face)

Your ventilation nurse specialist will help decide with you which mask is best for your child.

[1] A Sleep Physiologist is a professional trained in respiratory physiology and sleep science

What do I tell my child about Non-Invasive Ventilation?

Explain to your child that they are using their ventilator to help them breathe at night, so that they will feel better during the day.

Your child must get into a routine of using their equipment all night, every night and be encouraged by those around them. Support from parents and carers is key to the success of this treatment. At first, ventilation can be frightening for children but hopefully they will have had a positive experience in hospital and feel confident about using it at home.

Different approaches may be required for children, according to age:

  • Babies will not understand what ventilation is, so you will simply place the mask on your child at bedtime.
  • Infants will probably be more difficult and refuse to wear their mask or may be frightened by it. If they are frightened when the pressure starts, you can help by letting them fall asleep with the mask on and starting the pressure once they are asleep.

Ventilation can be explained to older children, and it is important that those around them are helpful and encouraging.

  • Teenagers may become fed-up about their treatment. They may be embarrassed at having to use their equipment when staying over with friends. Depending on medical advice, your child may be allowed to have an occasional night off their treatment.

Ensuring a good mask fit and preventing leaks can sort many problems. Please remember that you must not change anything about your child’s treatment unless you have spoken to their medical team.

Getting Started

Once we have agreed that your child needs ventilation, we will invite you both to a familiarisation session known as acclimatisation. During this session you will see a nurse specialist and sometimes a play specialist who will introduce the equipment in an age-appropriate way. We will put together a plan to trial the mask during the daytime without any pressure for two to three weeks before you come back to GOSH for the overnight ventilation trial.

The trial consists of two nights where your child will wear the equipment overnight. Your child may have already had a sleep study before they were diagnosed. The overnight trial will be much the same but this time your child will be asked to wear their mask and use CPAP or BIPAP while a sleep physiologist adjusts the pressures.

Ideally your child will sleep through the entire process and the doctor will review the trial on the following morning. Further adjustment of pressure, if required, will occur on the second night of the trial. After two nights you will be ready to go home fully trained and confident in using mask ventilation.

Settings for your child's equipment

Please do not alter settings on the ventilator other than those you have been shown. Your child’s doctor will decide the best ventilator settings and a sleep physiologist or nurse specialist will make any necessary adjustments.

Questions

Frequently asked questions

Answers

Frequently asked questions

Are there any common problems associated with mask ventilation use?

If your child is breathing out of time with the ventilator it can cause some discomfort while breathing. The most common reason for this is a mask leak. If the problem persists, it may mean that the settings need to be changed in a follow-up sleep study.

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Where do I get a machine and supplies?

The sleep physiologists or your nurse specialist will supply you with a machine and supplies to take home. You can send the sleep unit a message through the MyGOSH app or call the sleep unit if you need further supplies once you are home.

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What if the machine or supplies break or don’t work properly?

Most children will not suffer from one night without ventilation treatment. However, some children will be required to use this treatment every night, and your nurse specialist will inform you if this is the case with your child.

If a problem occurs with the functioning of your ventilator, please call the company who provide service cover on your ventilator (if in place, further information on vent prescription). Please contact them immediately as it is possible that the problem can be solved before bedtime.

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My child is refusing to wear the face mask now we are at home, what can I do?

If your child will understand, try explaining to them why they need the face mask and the benefits it has.

Find out what the problems are. If it is the pressure that they dislike, please contact the sleep unit at GOSH. It may be possible to put a ramp on the machine, which means the machine will slowly build up the pressure which may make it easier to tolerate.

If it is the mask your child dislikes, there are a few techniques which you could try.

Make the mask and ventilator part of your child’s night time routine. Attach the mask without the tubing, then read them a bedtime story – see if they can keep it on until the story has finished. Continue this technique each night until your child is comfortable, then try attaching the tubing and starting the ventilation.

Reward charts are a good way of encouraging children to wear their masks regularly. Set up a chart on their bedroom wall, showing the days of the week. Each night that they wear their mask, they get a sticker and at the end of the week, if they manage to wear it every night they get a reward.

If your child has brothers and sisters, get them involved. Ask them to play with the mask together so it becomes less scary.

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How do I stop my child from getting a pressure ulcer from the mask?

Pressure ulcers are areas of damage to your skin and the tissue underneath which are caused by something putting pressure on or rubbing the skin. Because your child will be wearing a mask overnight there is an increased risk that one could develop on your child’s face. These can be painful and may prevent your child from wearing the mask.

Always ensure that the mask is clean and dry before placing the mask on your child’s face.

The first sign of a pressure ulcer is an area of redness most commonly on the nasal bridge or the forehead. If the redness doesn’t completely disappear within an hour of removing the mask then you should use a barrier dressing (Siltape® or Aderma® are used at GOSH). Both are silicone-based dressings and should be placed over the affected area. It is a preventative dressing and should be used every night to protect your child’s skin.

Leopard/Kangaroo ward or the sleep unit can give you Siltape® to take home in the first instance. When you need further supplies, the sleep unit at GOSH can help.

If your child is still having problems with pressure marks, we may need to consider other dressings or changing the type of mask in use.

If your child’s skin is broken or bleeding, contact your nurse specialist or community nurses who will refer you to a tissue viability nurse.

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What do I do if the face mask is broken?

Please contact the Sleep Unit for a replacement mask as soon as possible. We will give you a spare mask after your trial.

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What do I do if my child gets a cold?

Please continue to use ventilation if possible. If your child’s nose is blocked or dry, consider using saline drops or spray which you can buy from your local pharmacy (chemist). If the saline does not help, please contact us to discuss alternative solutions.

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How long will my child need to use ventilation?

Your child will be followed up with regular sleep studies to assess how effective the treatment is, whether they still need it, or whether the pressure requires adjustment.

This is different for every child and is dependent on many factors such as their medical condition, age, severity of obstruction and surgical interventions if necessary.

We will also see you and your child at least once a year in a respiratory clinic.

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Looking after the ventilation equipment

Take the ventilator to be reviewed when you attend for future sleep studies and respiratory clinics.

To clean, wipe with a clean damp cloth.

Cleaning the ventilation equipment
Item Cleaning Schedule [Images to be added]
NIV mask • Wipe the cushion with a clean damp cloth daily
• Clean the cushion and frame once a week with a washing up solution, rinse thoroughly and leave to dry
• Handwash the mask headgear as and when needed
Ventilation tubing • Clean the tubing once a week with a washing up solution, rinse thoroughly and leave to dry
Humidifier chamber • Replace the water in the chamber each day with cooled boiled water

•Clean the chamber once a week with 1:10 ratio of white vinegar to water. Pour the mixture into the chamber and leave for up to 30 minutes. Then empty the chamber, take it apart and clean with a washing up solution, rinse thoroughly and leave to dry.
Ventilator and humidifier housing •Damp dust once a week
Air inlet filter • Check once a month and change after 3 months. Change sooner if the filter appears dark grey.
Do not wash the filter.

DO NOT use bleach, alcohol, strong household cleaners, or cleaning solutions containing alcohol, conditioners or moisturisers on any of your ventilation equipment.

Follow up care

Your child will need follow-up appointments and sleep studies to see how treatment is progressing. When you come for a follow-up appointment and sleep study, please take all your child’s equipment, including mask, machine, tubing, leads and so on, so that we can check them. We will be able to decide whether any equipment needs replacing and whether it is being used properly.

Contact us

If you have any concerns or questions about treatment, please contact us (details below).

The mask ventilation nurse specialists are available for you to contact Monday to Friday from 8am to 6pm on 020 7405 9200 Ext. 1726 or 07715428889.

You can also email them at:

LTVCNS@gosh.nhs.uk

Out of hours please call the sleep unit on 020 7405 9200 Ext. 0462.

We have drop-in clinics available for you to attend, please book this with the nurse specialists.

In case of medical emergency always call 999.

Mask Ventilation Nurse Specialists

Kangaroo Ward, Level 2, PICB Building

Sleep Unit

Alligator Ward, Level 4, PICB Building

Your feedback

We take all feedback seriously and want to hear about your experiences. Your feedback helps us to understand what we are doing well but importantly how we can improve. We will give you a feedback card when you come to the hospital but if you haven’t received one, please ask a member of staff. You can also provide feedback using this link

https://www.gosh.nhs.uk/your-opinion-matters/

Other information

Please contact the Patient Advice and Liaison Service (Pals) on 020 7829 7862 or by email on pals@gosh.nhs.uk if you need this information in another language or format.

Compiled by:
Long Term Ventilation Team and Patient Experience
Last review date:
April 2024
Ref:
2024F2360