What is a tracheostomy?
A tracheotomy is a surgical procedure to create an opening in the neck that extends into the trachea (“windpipe” or “airway”) for which a tracheostomy tube is placed to provide a stable and safe airway. General anesthesia is used during surgery in the operating room and your child will be kept asleep and comfortable during the procedure. The surgical opening in the neck is called the “stoma”. The trach tube is put into the stoma. One end of the trach tube rests outside the stoma. The other end rests inside the trachea. When your child breathes in, air goes through the tube into the trachea and to the lungs. When your child breathes out, air comes out of the trach tube. Your child may still also breathe in and out through their nose. Sometimes the trach tube is connected to a ventilator or oxygen to give additional respiratory support.
Why does my child need a tracheostomy ("trach")?
There are several indications for tracheostomies in children and this can oftentimes be different than their use in adults. Below are some of the most common reasons that children need tracheostomies. Always remember that every child is different, and even though you will likely meet other families who have children with trachs, try not to compare your child to theirs as they may very well have a completely different need than your child.
Very small or recessed jaw which can cause obstruction of air/oxygen from entering the airway and lungs. Some syndromes with upper airway obstruction include: Treacher Collins, Nager syndrome, Pierre Robin sequence, Beckwith-Wiedemann syndrome, Apert syndrome, Crouzon syndrome, Reese-Pfiefer syndrome. However, not all children with these syndromes need a trach.
Congenital airway abnormalities such as: bilateral vocal cord paralysis, severe subglottic stenosis (very narrow area below the vocal cords), or severe laryngomalacia or pharyngomalacia (floppiness and collapse of the structures above the vocal cords)
Chronic aspiration pneumonia or inability to cough and clear secretions (this is typically due to a neurologic injury or impairment)
Large airway or neck masses or tumors (cystic hygroma, cervical teratoma, congenital goiter, vascular or cystic malformation)
Prematurity with bronchopulmonary dysplasia, lung scarring or fibrosis, chronic lung disease, or inability to come off a ventilator or positive pressure ventilation during hospitalization. In these cases, a tracheostomy provides a way for a child to safely go home with a ventilator if they require assistance breathing or keeping their lungs open to exchange oxygen and carbon dioxide
Severe Obstructive Sleep Apnea or Significant Central Apnea
Frequently asked questions about tracheostomies
How long will my child have a trach tube?
This depends on the reason for the tube. Often, pediatric tracheostomy can be a temporary condition to stabilize a child and help them grow and develop outside of the hospital until they can have further surgeries to correct their airway issue if possible or simply to give them time to grow bigger and stronger until they outgrow the need for the trach. The trach is removed typically in a stepwise approach when it is no longer needed. But sometimes, the new airway must stay in permanently.
Will my child be able to speak with a tracheostomy?
The ability to speak depends on many things, including the reason for the trach, whether the vocal cords are damaged, and the type of trach tube. Your child’s provider can tell you more about what to expect. But a tracheostomy does not prevent a child from speaking and it is recommended that children with trach tubes should be plugged in to Speech therapy services in their communities.
Will my child be able to eat with a tracheostomy?
With time, many people can eat normally after a tracheotomy. But some precautions may be needed. Your doctor and a speech therapist will work with you and your child to help with diet.
If the trach tube is taken out, will it leave a hole?
If the trach is no longer needed, the stoma will be covered with a dressing. It will typically close on its own. Tracheostomy stomas often heal well and leave only a small scar. Rarely, surgery is needed to help close the stoma if it does not fully close on its own.
Can my child swim with a tracheostomy?
Your child’s tube cannot go under water. But your child can wade or sit in water, as long as the stoma and tube stay dry. This is something that should be discussed directly with your primary medical provider.
Can my child take a bath?
Yes, but your child’s trach tube must stay dry when they bathe. Do not let your child take a shower. To wash your child’s hair, hold their head back while carefully supporting their head and neck. Keep water away from the trach tube. Water, even a small amount, getting in the trach tube can lead to increased coughing, trouble breathing, and possibly pneumonia.
Can my child’s trach tube fall out?
Your child’s trach ties should keep the tube from falling out, even if your child coughs. The trach ties should be kept snug enough to only fit one finger between the child’s neck and the trach ties. But you should know what to do if the tube does come out, as you were instructed at the time of placement. Always remember, stay calm and put the trach back in!
Will I have support learning about the trach?
The thought of a tracheostomy may be scary at first. It can take time to get used to the idea. Your child’s health care team of doctors, nurses, and therapists can help you and your family. They can explain what your child’s tracheostomy involves and what it may mean for you. They will teach you how to care for your child’s trach and help you and your child adjust to living with one. Our organization is here to help as well! We hope to provide an extra layer of support for you, your trach dependent child, and family in the community. Please reach out if you need support or assistance.
If you have other questions, ask a member of your child’s health care team or send us a message and we would be happy to answer any general trach related questions for you.
What is a ventilator?
A mechanical ventilator is a machine that helps people breathe when they can't breathe well on their own. It pushes air in and out of the lungs through a tube that goes into the mouth or the neck. The machine can be set to deliver a specific amount of air, oxygen, and pressure to the lungs to make sure the person is getting enough oxygen. It is used for people who have trouble breathing due to illnesses or injuries and can help them get better and feel more comfortable.
What is a chronic mechanical ventilation?
Chronic mechanical ventilation is a treatment method that uses a machine called a ventilator to help your child breathe. The ventilator delivers air through a tube that is connected to your child's tracheostomy. The machine regulates the amount of air, oxygen, and pressure that your child needs to breathe.
Why is it Beneficial or Needed?
Chronic mechanical ventilation is beneficial or needed for a variety of medical conditions that can affect your child's breathing, such as chronic lung disease (premature birth or illness/lung injury), neuromuscular disorders, spinal cord injuries, and severe respiratory infections.
The ventilator ensures that your child's lungs receive enough air and oxygen, which helps to prevent respiratory failure and other complications. It also helps to reduce the workload on your child's respiratory muscles, which can become exhausted in conditions like neuromuscular disorders. This can help to improve their quality of life by reducing the fatigue and discomfort associated with breathing difficulties.
Chronic mechanical ventilation can also help to improve your child's overall health and wellbeing by providing better oxygenation to their organs and tissues. This can help to prevent complications such as cardiac arrest, brain damage, and organ failure.
Breath Rate/Respiratory Rate
The minimum number of times the ventilator will deliver a breath over 1-minute. However, your child may breath above this set rate if they are able
The volume of air given with each ventilator breath
Positive End Expiratory Pressure (PEEP)
The pressure left in the airway at the end of every breath, which helps keep your child’s airways open and improves their breathing
The amount of pressure that is used to inflate your child’s lungs during one breath
The amount of pressure the ventilator will deliver to assist your child when taking a breath. This pressure is in addition to the PEEP.
Peak Inspiratory Pressure (PIP)
The highest amount of pressure recorded by the ventilator at the end of each breath.
Inspiratory Time (I-time)
The ventilator will deliver a breath over the time amount of time (usually in seconds). This time represents how long the ventilator will help your child “inhale” during the breath
The setting that determines how easy it is for your child to trigger a breath on his/her own.
The percentage of oxygen in the air your child is breathing. The ventilator can adjust the FiO2 level to provide your child with the right amount of oxygen.
CPAP (Continuous Positive Airway Pressure)
Ventilator delivers a constant, set pressure to keep the airways open
BiPAP (Bi-level Positive Airway Pressure) Similar to CPAP
Ventilator delivers two pressures during each breath: IPAP (Inhalation Positive Airway Pressure) which is a higher pressure than the continuous EPAP (Exhalation Positive Airway Pressure)
Pressure Support (PSV)
Allows the patient to initiate all breaths but continues to provide pressure support and PEEP
Synchronized Intermittent Mechanical Ventilation (SIMV)
Provides pressure support, PEEP and a rate to support your child during their own initiated breaths
AVAPS (Assured Volume Averaging Pressure Support)
Ventilator is set to deliver a set volume. Similar to BiPaP, an EPAP is set. An IPAP range is set so when lowest set IPAP is not met, the ventilator can increase pressure within set range to deliver the volume of air
Troubleshooting Ventilator Alarms
WHAT DOES IT MEAN?
High peak pressure
High peak inspiratory pressure
Pressure of vent delivered breath is higher than target pressure – usually due to a blockage
Tube or circuit obstruction
“Fighting” the ventilator breath
Increased secretions or mucus plugging
Fluid in circuit
Low peak pressure
Low peak inspiratory pressure
Pressure of vent delivered breath is lower than target pressure
Disconnected from ventilator or circuit
Volume of air exhaled is higher than set alarm limit
Crying or deep breathing
Volume of air exhaled is lower than set alarm limit
High minute ventilation
The amount of air being received is high
Crying or deep breathing
Low minute ventilation
The amount of air being received is low
Leak around trach tube
Blocked trach tube
High Respiratory Rate
Your child is breathing faster than the set alarm rate
Anxiety, pain, discomfort
Water in the tubing can cause auto cycle of breaths
Cuff leak can cause auto cycle of breaths
There is a problem with the circuit
Pinched or detached tubing
Water in the pressure lines
Exhalation device is not working
Ventilator believes the circuit is no longer plugged in
Tubing is not connected
Machine has not detected a breath in a pre-determined length of time
Breathing rate has dropped
Child is not breathing
Child is disconnected and breathing is not detected