Supporting children with tracheostomies

Beau is a whirlwind of mischief and fun. To see him teetering at the top of the soft play equipment, you would have no idea he’d had a trickier start to life than most three-year-olds. Unless, that is, you spotted the plastic tube taped to his neck. 

Like many other children at Chestnut Tree House, Beau needs help breathing. His tracheostomy – a small, surgically-created opening on the throat with a tube that passes down the windpipe – facilitates this. 

No parent wants to hear that their child has to undergo life-changing surgery. Tracheostomies can sound scary, and I know some parents worry about what the future will hold. But I think most would agree that having a ‘trachy’, as we call it, vastly improves their child’s quality of life. 

I’m a Clinical Nurse Specialist and Chestnut Tree House’s Ventilation Lead. Since the hospice opened 22 years ago, there have been significant changes in the care that we offer. Thanks to medical advances, children and young people are living longer and with more complex conditions – and ventilation plays a big part in that. 

Above: Beau at Chestnut Tree House playing with arts and crafts. 

Why do people need a tracheostomy?

Here at the hospice, we care for about 40 children and young people that are ventilated, around ten of them through a tracheostomy. A child might need help breathing for one of several reasons. It could be anatomical – for example Pierre Robin syndrome, a congenital condition which affects the development of the face and mouth. These children have a very small lower chin and a tongue that falls back into the throat, all of which impedes breathing. 

Alternatively, the cause may be neurological. We have two children at Chestnut who have the same extremely rare condition – their brain doesn’t produce the hormone that tells our body to keep breathing while we’re asleep. So, they have to be ventilated every night, and whenever they nap. 

Sometimes, a tracheostomy is the result of some sort of trauma, such as a road traffic accident resulting in quadriplegia – paralysis of all four limbs.  

Above: Mikey at Chestnut Tree House enjoying a day with friends and family. Read more about Mikey here. 

What is a tracheostomy?

Sometimes, parents will know even before birth that their child will need a tracheostomy, and the operation is performed as soon as possible. In other cases, it will be the result of long discussions between the family and their medical team.  

After a tracheostomy, the child and their family will need to stay in hospital for several weeks. This is partly because it’s essential to learn how to care for the new tracheostomy. There’s a lot to learn, including tube changes, cleaning, suctioning and humidification.   

Ten children might not sound like a massive number in the context of the 300 young people on our caseload, but it has a big impact on the hospice because ventilated children require additional staff to look after them – two people, both specifically trained in the skills to care for a tracheostomy, usually a nurse and a healthcare assistant.  

Above: Sam enjoying a fun day out on the beach.

Learning to care for a tracheostomy

When I started here five years ago, there were around a dozen staff who could care for children with a tracheostomy. My role was created because of the number of children in the region with both a life-limiting condition and a tracheostomy. Since I’ve been here, we’ve been able to upskill the team so that 90+ per cent of the nurses and 60+ per cent of the healthcare assistants have the skills to care for a tracheostomy.   

That is a positive for the staff in terms of their career development, but much more importantly, it gives the parents more confidence to bring their children here. That’s important because these are some of the most complex children we look after. Often, they have spent long periods very poorly in hospital – in some cases, they’ve spent more than a year of their young life in hospital. Their parents have been through so much, including making very tough decisions. They have become the expert in their child and their condition, so it can take a while to trust other people to look after their son or daughter.  

Is a tracheostomy permanent?

Whether a tracheostomy is temporary or permanent depends on the underlying condition. Some children will require less help with breathing as they get older and can move to mask ventilation.  

Removal of the tracheostomy is called ‘decannulation’. Where possible, this will always be the aim. Although a tracheostomy can make a huge difference to a child’s quality of life, it does come with some complications. Any activity involving water or sand getting into the tube is potentially dangerous, even bathing. 

One of the questions we hear most often is “Can someone speak with a tracheostomy?” The answer is not completely straightforward. In children, the first consideration is whether they have normal cognitive function. If they do, how old were they when they got their tracheostomy?. Because the tube enters the throat below the vocal cords, there’s no air to vibrate them and therefore no sound. Usually, babies learn to speak by listening to the sounds they and other people make, so language acquisition is harder for them if they are missing that component. 

Nevertheless, some children learn to speak quite well after their tracheostomy is removed – it all depends on their background. Others have a ‘leak’ around their trach which enables them to make sounds. The medical team would balance the potential negative effects of that against the value of learning to speak.   

Above: Mikey getting up on stage to perform with a magical act.

Living with a tracheostomy

I understand how daunting it is for parents when they learn their child needs a tracheostomy. There’s no denying that it has an enormous impact on family life. Everywhere you go, you need to take a substantial amount of equipment, including suctioning equipment, spares and a ventilator. Travel comes with substantial considerations. Even a ten-minute car journey requires forward-planning, as technically another adult should be present as well as the driver. 

It’s a whole new way of life to learn. But while that is daunting, tracheostomies come with huge benefits. A child who is breathing better will have more energy for play and learning, making them better able to take joy in life.