It is not uncommon for a child with medical complexity to need help with breathing at some point. A Continuous Positive Airway Pressure (CPAP) or Bilevel Positive Airway Pressure (BiPAP) devices isare often used during acute events, such as pneumonia. CPAP and BiPAP may also be considered if chronic respiratory insufficiency develops over time. But chronic issues such as weak chest muscles or a compromised airway may make tracheostomy, with or without the use of a ventilator, something to consider.

Tracheostomy or “trach” is a surgically created opening in the front of the neck and the trachea, into which a tube is placed to keep the airway open. Some children will breathe more easily with the help of a tracheostomy tube, but others will experience limited benefit as their underlying disease progresses. Some will have a trach if a decision has been made to use ongoing home ventilation. Some families initially rely on CPAP or BiPAP as a way to keep their child comfortable while they consider the tracheostomy option.

A clinician might use the term “need” when reviewing the options with you. Ask the team to explain what they mean. “Need” is sometimes used to indicate that if it makes sense to support your child’s breathing chronically, then the best way to do that is with a tracheostomy tube or home ventilation. You will be the best person to determine if the recommended treatment will give your child better days, or if it does not make sense given other complex problems that may continue.

If you are considering mechanical ventilation at home, talk with the palliative team about the impact that having the equipment in your home will have on your family unit. Consider that caring for your child will require the constant presence of a trained caregiver, likely a home care nurse. Depending on where you live, this level of care may or may not be available. This is something you will want to explore before making your decision.

As with everything else in caring for a child with a serious medical condition, circumstances can change with shifts in your child’s health. Sometimes a child has medical problems that grow to overwhelm the treatments available to address them. These medical problems can then change how well your child can remain comfortable and enjoy each day. The palliative team and other specialists can help you consider whether and when treatment may no longer be beneficial. If you have palliative support, those professionals can become the keeper of your goals and check in with you about what is important to you as your child’s condition changes over time.

The CPN guide “Considering Tracheostomy” provides a detailed explanation of the procedure and suggests topics to discuss as a family and with clinicians.