Chronic Neonatal Lung Disease (CNLD)

A guide for parents

Table of contents

What is CNLD?

Chronic Neonatal Lung Disease (CNLD) is a term used for persistent breathing difficulties in babies. Babies have CNLD when they still need extra oxygen at 36 weeks gestational age (one month before their due date).

CNLD is sometimes called:

It can get a little confusing. But they all refer to the same condition.

Chronic Neonatal Lung Disease most commonly occurs in premature babies, whose lungs:

This leads to an inadequate supply of oxygen reaching baby’s lungs. They may need extra help and support with breathing.

Two important strategies that can help in the early days

CNLD and its effects on your baby

As your baby was born premature, their lungs are very immature. They may need the support of a breathing machine (ventilator) for a period of time. The pressures used by the ventilator to keep your baby's lungs open may cause inflammation in their lungs. This will make your baby less able to breathe in oxygen.

Their lungs will eventually grow and your baby will no longer need the support of the ventilator. However, they may still need some extra oxygen to help them compensate for their lung injury. This extra oxygen is given to them via other less invasive methods, such as:

Babies with CNLD use a lot of energy breathing and may need high calorie feeds. Breastfeeding is best for your baby. However, sometimes if there are growth or feeding concerns, babies may go home with a feeding tube (a nasogastric tube, or NGT). This tube goes through their nose and into their stomach. Specialist nurses will support you if this happens.

Oxygen will used to support your baby until their lungs have matured enough to breathe on their own all the time. Most babies will be able to come off oxygen completely by their first birthday.

Home Oxygen

Once your baby is healthy enough, you and your doctor may decide it is safe for your baby to go home ‘on oxygen’. Specialist nurses and doctors will support you with this. It is important to remember that the oxygen is only a support to allow your baby to develop and grow.

Before leaving hospital your baby will undergo an Air Challenge and a Car Seat Challenge. These tests will make sure your baby remains safe.

What will happen next?

Discharge planning meeting

Before leaving hospital, you will be part of a discharge planning meeting. This meeting could include:

The healthcare professionals in charge of your baby will prescribe the oxygen levels your baby needs. For safety reasons, this may be a slightly higher amount of oxygen than your baby needed in hospital. As parents, you will have training in how to use home oxygen before going home. Hospital staff will help you with this training. They will also organise fitting the equipment you will need at your home.

A member of the Community Children's Nursing team will visit your home. This will be at an agreed time, which is usually within a week of you and your baby leaving hospital, preferably within the first 48 hours. After this visit, arrangements should be made for review / saturation checks with community teams. Any visits will be arranged and agreed with parents.  

Further visits by community nurses will be arranged to check-up on your baby. Use these visits to ask any questions you may have. These visits are usually weekly, but the nurses can visit more regularly if clinically needed.

Usually, babies with CNLD will stay on home oxygen for the first 3 months. This is until they see the consultant in the specialist Home Oxygen Clinic. The consultant will assess whether the amount of oxygen therapy should remain the same or be reduced.

Baby is weaned off home oxygen depending on the following conditions

If home oxygen supplementation has not been reduced after 1 year, your baby should be referred to a respiratory / ENT specialist in London. This is so any related conditions can be ruled out. In some cases, a local paediatrician with respiratory interest can be contacted. They can give further advice and management.

To learn more about the decision-making surrounding your child's oxygen, please refer to the Timeline section of this leaflet.

What equipment will I be given?

Practical tips

Having a child less than two years old with bulky medical equipment means you qualify for a blue badge from your local authority. Contact them to arrange this.

Do not allow smoking or naked flames in the same room where your baby is receiving oxygen, or where the oxygen cylinder is stored.

Frequently asked questions

What do I do if my baby is unwell?

Signs to look for, when your baby is unwell.

Call 999 immediately if you feel your baby is seriously ill or getting worse quickly

In a non-emergency situation, call your Community Children's Nursing team.

Depending on where you live, you will have open access to:

If your baby is unwell, you must call one of the above wards and tell them you are coming to hospital. You can then go straight to the ward rather than going through the Emergency Department.

Local Emergency Departments with paediatric (child) facilities

Important numbers and links for more information