Going home on oxygen

Some babies born premature or sick who need more help with their breathing will go home on oxygen. This means their breathing will be supported by additional oxygen from a tank which is typically given to them through a set of tubes that sit in their nostrils.

Remember that you should not be expected to do anything at home that has not been explained to you by a healthcare professional. The unit staff will give you lots of support to make sure you are comfortable with the equipment and confident and prepared to use it.

Remember that it is OK to ask questions if you are unsure. Talk to the unit staff about your baby’s oxygen requirements outside the home before you leave the unit. You should also have support from a community neonatal nurse who you can talk to when you are at home.

Why does my baby need home oxygen?

Your baby may need home oxygen because their lungs are not working well enough for them to get enough oxygen from the air. The most common reason for this is a condition called chronic lung disease (CLD). This is where fragile, immature lungs become scarred because of inflammation. It is also called bronchopulmonary dysplasia (BPD).

Your baby may need to go home on oxygen for other reasons. Ask the staff at the unit if you are unsure.

Where can I get oxygen equipment?

All oxygen equipment is supplied by one of four suppliers depending on where you live in the UK. The oxygen supplier is responsible for maintenance and any equipment failures. They will also provide emergency cylinders in case of electricity or equipment failure.

You can find more information about oxygen suppliers on the NHS website. Your supplier will give you information packs, training, and a number to call if you have any questions.

Further information – guidance on the process

Before the oxygen is ordered, your community neonatal nurse or other healthcare professional will fill in an Initial Home Oxygen Risk Mitigation (IHORM) form and a Home Oxygen Consent Form (HOCF).

To do this, they will ask you some questions which will assess any risks to you or your baby if home oxygen is installed. Completing these forms will help to make sure that your home is suitable for home oxygen.

A member of unit staff will order your baby’s oxygen on a Home Oxygen Order Form (HOOF). They will also write a HOOF prescription for the amount of oxygen your baby will need. This will be given to the oxygen supplier in your area.

They will contact you and arrange to deliver and install the oxygen supply to your home. The unit staff will ask for your consent for the supplier to contact you.

Preparing for your baby to go home on oxygen

Before you go home, you should have a discharge planning meeting which will include healthcare professionals involved in your baby’s care. In this meeting, they will plan for your baby to go home on oxygen. This is a good opportunity to ask if you have any questions.

A healthcare professional will visit your home to support you with any practical issues. This could include where to store the oxygen tanks or install more plug points. They will also visit you regularly to support you with any practical issues and will advise you as early as possible if you need to make any adaptations to your home.

Your oxygen supplier will tell your gas and electricity supplier that you are storing oxygen in the home. This is important so that they can prioritise you if there is a power cut in the home. You will need to register your baby with the GP before the oxygen is ordered.

Things to consider before going home:

Ask questions about the equipment and how to monitor the oxygen supply so that you feel comfortable using it.

Ask a healthcare professional how to check the prongs and tubes are connected correctly and how to check for blockages.

Contact your home and car insurers and your landlord, if you have one, to tell them you will be using home oxygen.

Check your smoke alarms so you know that they work properly. Some oxygen suppliers will also contact the Fire and Rescue service to tell them that you are using home oxygen. The Fire and Rescue service may contact you to do a fire safety check for your home.

Check who you can get support from or answer any further questions once you have been discharged. You may be being supported with this transition home by a community nurse, another member of the neonatal team or health care professional. It can help to make sure you have details of how to contact them should you need to. Checking contact details of the oxygen supplier may be helpful too.

The supplier will show you how to use the equipment and will talk to you about the safety measures when you have oxygen at home. Unit staff will also train you to use the equipment. You could ask a family member or a friend to be there when the oxygen is installed, so that they also know what to do. It may also be helpful to take notes when you are being trained, so you can refer to it if needed.

Safety when your baby is going home on oxygen

Oxygen is a fire hazard, so it is important to be very careful around flammable substances and to keep cylinders away from heat sources. Is it very important that you do not smoke or allow anyone to smoke near your baby. This includes e-cigarettes. The NHS website has some more information about what to be aware of.

How will I know what level of oxygen to use?

A healthcare professional supporting you with your discharge from the unit will explain the amount of oxygen that your baby needs. It is not advised to reduce or increase oxygen without your healthcare professional’s advice, as this can be dangerous. If you think the level needs changing, talk to your community neonatal nurse or seek medical advice.

You should expect the levels to vary as the needs of your baby change, but we would always recommend that the baby is checked by a health care professional before changes are made.

Going outside with your baby on oxygen

Some parents worry about going outside with their baby on oxygen, especially as there is a lot of equipment to move about. But many families are able to go out and about with oxygen.

You will need to have a supply of portable oxygen to do this. Portable oxygen is prescribed alongside the oxygen supply requested for use inside your home. Portable cylinders will come with a carry bag to make it easier to travel in the pushchair or car.

When you are ready to go out, remember to check the oxygen flow and contents of your portable oxygen supply before leaving the home. When using a portable cylinder, check that the oxygen supply is enough for the time you will be out.

If you use public transport or taxis, some transport companies may not take oxygen on board, so check this is okay first.

Moving around the home with oxygen

Moving around the home may seem challenging. The best and safest way to move around is to take your baby to the room you want to go to, and then come back for the low flow meter and tubing. The oxygen supplier may be able to provide long tubing to allow you to move around the house.

What to do in an emergency

The unit staff will talk to you about who to contact if you have concerns about your baby when they have left hospital. Your oxygen supplier will provide you with a 24-hour emergency contact number. If you are worried your baby is not getting enough oxygen, is having difficulty breathing or might be seriously ill, call 999.

We have more information about signs to look out for if you think your baby might be becoming unwell.

Oxygen costs

Using oxygen in the home can impact your energy bills. If your baby comes home with oxygen, you may be eligible for a rebate from the oxygen supplier for the cost of electricity usage. Scope’s website has more information on this.