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Caring for ventilated children

by Hannah Lines, ventilation nurse specialist at Chestnut Tree House

Studies show that the number of children and young people reported to be receiving long-term ventilation in the UK increased from one in 1975 to almost 1,400 in 2013.

At Chestnut Tree House, we care for lots of children and young people whose lives are supported and maintained by ventilation. Living with a ventilator changes a child or young person’s daily life, as well as their families. My role, as a ventilation nurse specialist, is to support families in accessing the care and support they need to help them live with a ventilator.

What is a ventilator?

In short, ventilators are breathing machines that help keep your lungs working. If a child/young person has long-term ventilation, that means that they use a ventilator or mask to aid their breathing for some, or all, of the day. Some of the children we care for have a tracheostomy tube – a tube that is inserted into the windpipe, and a ventilator which they use all the time.

There are many different reasons as to why a child or young person may need this kind of support, and it can result in complex medical needs for the child requiring a high level of care and supervision by family members.

Why do some children need to use a ventilator?

When a child or young person initially requires ventilation, they are often in an intensive care or high dependency unit in a hospital for a long time – sometimes up to a year. For some children this breathing support is needed from birth, for some it is needed as their condition progresses, and for others it is the result of an illness or injury. These hospital stays are often long, and children or young people are only discharged when the relevant plans and support are put in place to ensure that they can leave the hospital safely.

Living with a ventilator at home

Living with a ventilator can require 24/7 care, and parents and carers often become experts in their child’s medical needs. Daily life changes when a child has a ventilator because of the high level of supervision required and the large amount of equipment. It can make accessing various activities more challenging such as swimming and playing in the park, however we work hard to make all these activities as accessible as possible. A big part of my role is ensuring that families don’t feel alone and have access to the support they need. That might mean regular visits to their homes, a short break at the hospice, or help navigating doctors and hospital appointments.

Training and development at Chestnut Tree House

We have a fantastic team at Chestnut Tree House and training and development ensures that we can provide the best quality care possible. I ensure that all staff receive the appropriate training to care for ventilated children, and work with them to make sure that we’re up to date with the latest ventilator research skills.

I’ve recently also provided training support to our adult hospice service (St Barnabas House in Worthing) in the care of a tracheostomy.

Moving forward

I’m currently looking at more ways we can support ventilated children and young people and their families. This includes providing a safe environment where families can bring their child to play and for them to meet others with similar needs.

Other specialist care we give

We care for lots of amazing children with very complicated and rare illnesses. Meet Lily, who is the 7th child in the world to be diagnosed with You-Hoover-Fong Syndrome (YHFS). Her and her family have been visiting Chestnut for several years.

Lilly’s Story

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