Key points to remember about home oxygen for infants

• some babies need help with their breathing but don't need a machine to completely breathe for them
• home oxygen can help these babies
• your baby will breathe oxygen through small plastic tubes (nasal cannulae) that sit under the nose
• try to keep your baby away from people who have infections

Why does my baby need to go home on oxygen?

Babies may need to have oxygen at home if they have:

• chronic lung disease (CLD)
• underdeveloped lungs in conditions such as diaphragmatic hernia
• airway problems such as obstructive sleep apnoea
• an unusually slow breathing rate (hypoventilation) - often seen in babies who have low muscle tone
• an illness and are receiving palliative care to help with breathing and comfort

How will I know when my baby is ready to go home with oxygen?  

Your baby should be feeding and growing appropriately and be medically stable. There are no specific 'numbers' for this growth as it will depend on many things that are individual to your baby. Your paediatrician and neonatal nurse will be able to provide advice on this.

What equipment will I need to give my baby oxygen at home?

Your baby will need a supply of oxygen. An oxygen concentrator or an oxygen cylinder (with low flow adapters) will deliver oxygen to your baby. If you use a concentrator, you will also have a small oxygen cylinder for backup in case there is a power cut. You can also use the small cylinder for travelling in the car or pram.

An oxygen concentrator works by drawing in the air that we all breathe and removing part of the air called nitrogen. This increases the oxygen levels and delivers purified oxygen to your baby.

Make sure you let your power company know that your baby is using home oxygen in case of a power cut.

How much does it cost to run an oxygen concentrator?

The power to run the oxygen concentrator costs approximately $1 to $2 a day. It is worth talking to your local Work and Income New Zealand (WINZ) office about whether you can get funding for this. Speak to your homecare nurse about getting a letter of support for both your power company and WINZ. Some district health boards (DHBs) only use oxygen cylinders and they will deliver these to your home for free.

How does it work?

Your baby will breathe oxygen through small plastic tubes (nasal cannulae) that sit under the nose. A dressing and tape will hold the tube in place and protect the skin.

Some babies will need an oxygen saturation monitor, but in most cases, babies only need a monitor for running overnight oximetry [1] to help with oxygen weaning.

Safety

It is important to be careful when using oxygen in your home. Your nurse will talk to you about safety before your child leaves hospital. 

What are some things I need to remember when using home oxygen?

• there should be a no smoking policy in your home
• remember to display a no smoking sign clearly in your home and car
• do not take your baby within 2 meters of open fires, gas heaters, gas stoves, gas ovens, barbecues, lit cigarettes or similar items
• if you have an oxygen concentrator it must be kept in an open area clear of walls, curtains, and furniture
• do not use, or put the oxygen tubing near electric heaters
• securely tie the oxygen cylinder in a fixed position while in the car
• partly open the car windows to avoid the cylinder overheating

How can I keep my baby on home oxygen safe at home?

It is important to keep your baby away from people with other infections as much as possible. This means staying at home more than usual, particularly over your baby's first winter. Ask anyone who is unwell not to visit you. 

Who will help us when we go home with home oxygen?

Most district health boards have a neonatal homecare or outreach nurse (although they may be called a different name). This nurse will be specialised in medically fragile infant care and have direct links back to the hospital.

When a baby is medically fragile and attached to oxygen it can be difficult getting out of the house.

Friends and relatives may be willing to help but there may also be funding available to help with respite care (such as carer support days). Talk to your nurse about what might be available in your area.

See Financial help when your child has a disability or chronic condition [2].

How can friends and family help when my baby is on home oxygen?

If friends or family can help, encourage them to do the household chores so that you can spend more time with your baby. Bringing meals is also helpful. Ask them to stay away if they or their family are unwell.

Who do I call when something goes wrong with my baby on home oxygen?

If you think it is an emergency, don't hesitate to dial 111 within New Zealand (use the appropriate emergency number in other countries).

If you think it is an emergency, don't hesitate to dial 111 within New Zealand (use the appropriate emergency number in other countries).

It is a good idea to become a member of St John Ambulance [3]. There is a small yearly fee, which gives you free unlimited ambulance use for your whole family. If you cannot afford the fee, contact your local WINZ case worker who may be able to help you.

During working hours you can ring your homecare or outreach nurse. After hours it may be best to call the Newborn Intensive Care Unit (NICU) but your nurse will help you develop a plan.

Soon after going home, it is a good idea to make an appointment to see your family doctor so they can become familiar with your baby's condition. Your family doctor will be an important contact for you when your baby becomes unwell.

When should I seek help for my baby on home oxygen?

Before your baby goes home from hospital, your healthcare team will give you advice about what symptoms are normal and what are not.

When you are home, your homecare nurse will talk with you about how to monitor your baby's progress.

Call your homecare nurse or family doctor if you notice your child showing any of the following signs:

• rapid, shallow or noisy breathing
• belly sinking in with breathing
• pulling in of the skin between the ribs with each breath
• growing tired from breathing
• more coughing than usual
• panting, wheezing or grunting
• pale, dusky or blue skin colour around the lips or nails
• trouble feeding, excessive spilling, or vomiting with feeds
• signs of infection such as fever