Tracheostomy is an increasingly common procedure in chronically ill and ventilator dependent infants in the NICU. Tracheostomy can be performed to overcome anatomical airway abnormalities—such as congenital tracheal stenosis o postnatal subglottic stenosis—and may not require ongoing mechanical ventilation. In other instances, the presence of tracheomalacia may prompt the placement of a tracheostomy to facilitate long-term assisted ventilation and positive-end-expiratory pressure (PEEP) as a therapeutic intervention for months to years as the airway continues to grow and become more rigid. Tracheostomy also can be used for managing chronic neonatal lung disease (chronic lung disease, CLD; or bronchopulmonary dysplasia, BPD) and be accompanied by chronic ventilator use. In some neurologically impaired newborns and young infants, tracheostomy may be performed as a measure to protect their airway that is considered to be at risk for collapse, or aspiration, and/or assisting with ventilation when there are disorders of central respiratory drive. Regardless of the indication, tracheostomy can be a life-saving procedure. However, it can be accompanied by serious medical complications, in addition to social and ethical burdens that may impact the patient and family’s long-term outcome. As the use of tracheotomy has been increasing in North America, limited data is available about the outcomes of these children, and how to best advise families on pursuing this treatment [4].

In a recent study conducted in 2006, it was noted that there were approximately 7800 patients discharged from US hospitals on long term mechanical ventilation following tracheostomy. This was a 55 % increase since 2000, with hospital charges increasing 70 % over that same period [5]. In addition to significant in-hospital time and expense, these patients also required significant in-home health care resources, with home nursing and medical supplies. While not the focus of the study, there were in this same era children who received tracheostomy without associated ventilator dependence. Such children would also require escalated in-home support.

Regardless of the need for assisted ventilation following tracheostomy, infants receiving a tracheostomy are at risk for related medical complications. A study from Alberta Children’s Hospital in Canada reported a 90 % incidence of infection, 56 % incidence of tracheal granulation, 10 % incidence of mucous plugging resulting in cardiopulmonary arrest, and a 10 % risk of accidental decannulation [6]. Tracheostomy placement can be seen as a long-term medical commitment. Evidence from Children’s Hospital of Los Angeles, looking at patients with tracheostomy with long-term mechanical ventilation between 1977 and 2009, revealed that 61 % of patients remained on outpatient mechanical ventilation, 18 % were off of ventilator support, and the remainders were deceased [7].

Following tracheostomy, there are considerable delays in discharging patients home from the hospital. These delays have been associated with a myriad of issues, including insurance coverage, recruiting local home health nursing and respiratory care, limitations of support in certain geographic locations, constructing the optimal home environment to safely provide needed technology, and overcoming various social issues regarding family relationships, substance abuse, language barriers, education level and employment [8, 9]. Educating parents on necessary tracheotomy care and close patient monitoring can be time consuming, and can also account for discharge delays beyond a patient’s clinical readiness. In addition, tracheostomy can be associated with more frequent outpatient clinic visits, ED visits, and inpatient hospitalizations.

There is limited data on how parents perceive both their own and their child’s quality of life following tracheostomy. One study from London found that tracheostomy on a child had a varying impact on the families’ quality of life. Caregivers reported an impact on their personal health, ability to sleep, and have strong relationships within and outside of the family. They also reported more difficulty maintaining paid employment—and thereby had reduced annual income. Caregivers also report difficulty receiving the amount of nursing hours they feel is needed to support their child [10]. A survey from Duquesne University in the United States, using a validated model to determine family distress, found that parental caregivers of infants and toddlers with a tracheostomy at home were in moderate distress and had a quality of life lower than that of the average age-matched healthy adult [11].

Because of these factors, decisions regarding the placement of a tracheostomy and embarking on long-term home respiratory care can create moral distress among health care workers and parents alike. When surveyed, >60 % of physicians report that they would definitely not want life sustaining treatment should they require being maintained on a ventilator [12]. However, as stated, tracheostomy is being performed at an increasing rate, with many such children requiring long-term ventilation. This creates an ethical tension in the decision to pursue tracheostomy, as clinicians may be recommending a procedure and associated therapy that they would not want for themselves. This issue is further compounded when a child has other complex medical problems, perhaps birth anomalies requiring other surgeries, and/or profound neurological disabilities. Ethical questions may arise about whether pursuing tracheostomy with home ventilation is in the best interest of the child patient, and whether it is worth the costs and consequences accrued [13]. Yet, there is little published data to describe how often this tension translates into medical practice, and how often involvement of an ethics committee or palliative care service may be pursued to investigate these concerns.

In the authors’ center, there are more than 50 tracheotomies performed each year, with the number continuing to climb. The patients come either from the neonatal or pediatric intensive care units. The process for identifying which patients are optimal candidates for the procedure is, at times, inconsistent and a better way to predict potential outcomes or complications is currently being sought. Many of the long-term outpatient outcomes are unknown to the inpatient physician that conduct counseling for families and advise them about tracheotomy. Neonatologists and critical care clinicians that do not participate in long-term follow-up clinics are in a sense blind to the net risks and benefits over time—being more familiar with tracheostomy as a means to getting the patient out of the ICU. In such a setting, the adequacy of procedural informed consent may not be optimal for the family. Patients that will ultimately be followed by a home ventilator team, pulmonologist or otolaryngologist as an outpatient, should likely receive a pre-tracheostomy consultation by this future managing team in order to gain the greatest understanding of their potential needs and outcome. Hopefully, in the future having data on the outcomes and complications for these patients will optimize informed consent for such procedures.

Tracheotomy can be a life-saving procedure, but it can have significant complications that impact the patient and family over an extended period of time and across care environments. In order to ensure the best possible outcome, clinicians need to understand who is receiving the procedure, their long term outcomes, and their medical, social and ethical ramifications.

Renal failure may occur in newborns and young infants due to acute crises (asphyxia, sepsis, shock) or as a reflection of a longer-standing end-stage renal disease (ESRD). In the former, acute kidney injury (AKI) can be transient or complicated by protracted oligo-anuria, systemic hypotension requiring vasopressors drugs, multiple organ-system failure and acidemia, or the need for assisted ventilation and dialysis—all of which have been associated with increased mortality in children [14–16]. For newborns with ESRD, the common etiologies are long-standing problems of renal maldevelopment and include autosomal recessive polycystic kidney disease (ARPKD), renal dysplasia that may result in small kidneys or cystic dysplastic kidneys, and obstructive uropathies. Congenital absence of the kidneys (Potter’s syndrome) is generally considered to be lethal, although technologic support can theoretically be mustered [17].