What is a tracheostomy? A tracheostomy is a surgical procedure where an opening is created in the neck to place a short, curved tube into the trachea (the breathing tube that connects the mouth/throat to the lungs). This tube helps a baby breathe, and is placed by an Otolaryngology or ENT (Ear, Nose, and Throat) surgeon.
Who needs a tracheostomy and what are the benefits? Infants may need a tracheostomy for different reasons. The most common reasons a baby may need a tracheostomy include:
A blockage or obstruction in the upper airway (in the trachea itself or areas above it). For these infants, the tracheostomy allows air to get past the blockage to the lungs.
Severe BPD and long-term ventilator support. For these infants, the tracheostomy allows infants to receive ventilator support at home while lungs grow and heal.
Excessive secretions which can block the airway. For these babies, the tracheostomy allows a safer way for caregivers to suction secretions.
Many babies will have no devices in their mouth or on their face soon after the tracheostomy is placed. This will allow them to use their mouth as they grow and develop, and later, eat, drink and eventually learn to talk.
How is a tracheostomy performed? When it is decided that your baby needs a tracheostomy, many teams will discuss next steps. Your family will meet with the Pulmonary Habilitation Program and ENT team (see chapter on Home Mechanical Ventilation). Many discussions and education sessions will take place. The ENT surgeons will meet with your family to discuss the details of the surgery. Nursing staff will also show family members a tracheostomy on a doll to familiarize caregivers with the procedure and the equipment. You, along with the NICU team, the BPD team, and the surgeons will decide when your baby is ready for this surgery.
Once your baby is ready for surgery, they will be taken to the operating room and given general anesthesia, before an incision is made on the neck, creating an opening or “stoma” for the tracheostomy tube to be placed into the trachea.
During the first 5-7 days after the surgery, the tracheostomy site will need to heal, and your baby will need to be kept still and comfortable with the use of different medications. This is a perfect time to start learning about how to care for the tracheostomy with your baby’s nurses. After that, the ENT team will perform the first tracheostomy tube change at the bedside and make sure everything is going as expected.
How is a tracheostomy cared for? Our staff will help your family members learn how to care for your baby’s tracheostomy. Families will have many opportunities to practice before discharge, and the more families practice, the more comfortable they feel before going home. Your family/caregivers will learn:
How to suction secretions
How and when to change the tracheostomy tube and tracheostomy ties
How to care for the skin around the stoma
How to use a ventilator at home and deal with emergencies
How does a tracheostomy affect speech and feeding? At first, infants with a tracheostomy will not be able to cry or talk. Over time, there are ways of helping children with tracheostomy tubes develop language skills. Infants with tracheostomy tubes will receive Speech therapy to practice feeding skills and typically have opportunities to practice oral feeding when ready. In the beginning, almost all infants with a tracheostomy require an alternate way of being fed, such as with a gastrostomy tube, or G-tube (see chapter on feeding options).
Will the tracheostomy ever be removed? How long an infant needs a tracheostomy depends on the reason why it was placed and whether or not those problems have resolved. When it is no longer needed, it may be removed by the ENT surgeons.
Some babies or children may require an airway surgery in order for their tracheostomy tube to be safely removed. Your baby’s doctors will discuss how long it is expected that your baby will need their tracheostomy, and some of it will depend on how long they will need a ventilator.
It can be difficult to predict how long a child may require their tracheostomy tube (usually several years), but this can be discussed regularly with the ENT team.
We realize that needing a tracheostomy and a ventilator are life-changing events that affect your baby and your entire family. No one “wants” their baby to have a tracheostomy and a ventilator in order to survive, and such a need means your baby is sick. Your team will discuss prognosis, alternatives, and ways to deal with such decisions in a gradual way.
Benefits to having a tracheostomy
Issues to consider
Need for less sedating medications
Possibility to go home
Dealing with life-threatening emergencies
Possibility of need for airway reconstruction in the future
Our hospital has a program to support families who have a child with a tracheostomy. If you are interested in connecting with another family, please let your baby’s care team know. You will also have a chance to learn more about tracheostomy care with other educational materials and helpful videos. Please ask your care team about these other resources to learn more.