Deciding About a Breathing Tube (Tracheostomy) for Your Child

Tracheostomy is surgery to make a small opening through the front of your child's neck into the windpipe (trachea). A breathing tube, often called a trach tube, is placed through the opening.

The tube lets air move in and out of your child's lungs without going through the nose or mouth. If your child needs help breathing, the tube can connect to a breathing machine (ventilator).

A tracheostomy can be used for a short time or for a longer time, depending on your child's needs. For some children, the tube can be removed later, when they can breathe safely on their own.

Your child might need a trach tube if their airway is narrow or blocked. This can happen from a condition present at birth, an injury, or swelling.

Some children may need a ventilator for a long time. For long-term use, a trach tube may be safer and more comfortable than a tube through the mouth or nose.

Some children have weak muscles that make it hard to breathe or cough. Lung diseases or being born very early also may lead to the need for long-term breathing support.

The trach tube gives your child a stable and secure airway. It's more comfortable than a breathing tube through the mouth or nose. It may help your child leave the intensive care unit (ICU) and go home from the hospital.

Your child may be able to move, play, and be held more easily. Some children can learn to eat by mouth with a trach tube. Some can make sounds or talk. A device called a speaking valve may help with this. The tube can also make it easier to do daily care, such as suctioning mucus and giving breathing treatments.

A tracheostomy has risks, such as bleeding, infection, and air leaking into the chest or under the skin.

After surgery, the tube can come out or get blocked with mucus. If either of these things happens, it is an emergency. It can cause death if it's not fixed right away. Other risks include:

• Infections in the windpipe or lungs.
• Scar tissue in the windpipe, which may narrow the airway over time.
• Irritated or broken skin around the opening.
• Changes in your child's voice and speech development.

Your child will need a trained caregiver nearby at all times. Caring at home for a child with a trach tube takes time, training, and support. This can be stressful for families.

Before your child goes home, you will learn how to care for the tube. This includes suctioning, cleaning the skin, and changing the tube. You will also learn what to do in an emergency, such as if the tube comes out or gets blocked.

You will need supplies and equipment at home, such as a suction machine and extra tubes. Some families have home nurses to help with care.

Your child will have regular follow-up visits with the care team. Over time, the team will check if the tube can be removed.

There may be other ways to help your child breathe. Some children may be able to use a face mask connected to a breathing machine (noninvasive ventilation). Your child may be able to stay on a breathing tube through the mouth or nose for a short time.

Medicines and breathing treatments may help with some breathing problems. For some children with serious illness, families and the doctor may focus on comfort care.

Whatever you decide, your child's care team will keep supporting your child and your family. You can ask what is likely to happen with each choice. And you can change your mind. This decision can be talked about again as your child's needs change.

This is a shared decision between you and your child's doctors. Talk with your child's care team to help decide if a trach tube may be right for your child.

Think about your child's overall health and what you hope the tracheostomy will do for them. Think about how it may affect your child's quality of life and your family's daily life.

You may want to ask the care team how long your child may need the tube and if it may be removed later. Ask what care your child will need at home, and who will help you provide it. Ask about training, supplies, home nursing, and other support for your family. And ask what may happen if your child does not get a tracheostomy.

You can also ask to talk with other parents of children who have a trach tube. And you can ask if a palliative care team can help. They support families making hard medical decisions.