Children’s Mercy’s Infant Home Ventilator Program is a unique full-service program that provides individualized care in the home setting. Babies with chronic respiratory failure who need prolonged ventilator assistance have the opportunity to live at home rather than in an intensive care hospital environment.

Children’s Mercy initiated the program in 2005 in response to an increased number of infants with a need for prolonged ventilation support. The program enables the child and family to have as much normalcy as possible while still receiving complex medical care. The majority of patients have what is considered to be reversible disease. Eventually these infants are able to be weaned from the ventilator and have their tracheostomy removed. With approximately 15 new patients a year benefiting from the service, Children’s Mercy has one of the largest-volume programs of home-ventilated infants in the nation.

Our primary home ventilator team consists of three neonatologists, an otolaryngologist, a registered nurse coordinator and a social worker. The team works closely with other pediatric subspecialists, including cardiologists, pulmonologists, neurologists, developmental pediatricians and speech, occupational and physical therapists.

When a patient is identified as needing long-term ventilator support, our team completes an assessment to determine if the Home Ventilator Program is an appropriate option. The infant may require long-term support for diagnoses such as chronic lung disease, sequelae of severe respiratory infections, airway anomalies, congenital heart disease, multiple organ disorders, genetic abnormalities or metabolic diseases.

Once accepted into the program, the medically complex infants are discharged to home from either the Intensive Care Nursery or the Pediatric Intensive Care Unit. Family preparation includes an extensive training period and multiple practice sessions with the equipment, plus coordination with the home nursing companies, the durable medical equipment companies and the primary care physicians to ensure continuity of care. The program provides the complete medical home for most of the infants in the first few months after hospital discharge.

Neonatal physicians oversee the home ventilator clinic, providing care while patients are in the hospital and after they transition to home. ENT and pulmonology physicians also provide patient support. And a physician member of our team is available to families by phone 24 hours a day for questions or problems. Members of the home ventilator team see the babies as outpatients on a regular basis to assess and manage their complicated medical needs.

“The program is working well, and to date has a 90 percent survival rate for these high-risk patients,” says Linda Gratny, MD, Director of the Home Ventilator Program. “More importantly, the program allows the children to be integrated in to their families’ lives and to grow and develop in the home. It comes down to the child having the best of both worlds—comprehensive and coordinated medical care and a nurturing family environment.”