Compassionate Caregivers

The concept of a neonatal ICU did not exist for newborns and infants before the 1960s, when President John F. Kennedy’s newborn, Patrick, died from respiratory failure. “From that heartbreaking moment for the president and his family, the motivation arrived to develop specialty care for newborns,” said neonatologist Matthew Bizzarro, MD.

Accordingly, Louis Gluck, MD, at Yale-New Haven Hospital, was the first doctor in the nation to develop such a program. In recent years, the population of the hospital’s neonatal ICU has grown in number and complexity, mostly due to an increase in premature births.

These newborns are subject to many challenges, including lung problems due to underdevelopment. Babies born at or near term can also have respiratory failure related to a multitude of causes. When these problems are severe and do not respond to traditional methods of support, Extracorporeal Membrane Oxygenation (ECMO) may be offered. The first word in the acronym means “outside of the body,” the second word stands for a type of artificial lung, and the third word represents the process of delivering oxygen into the blood.

When an infant is recommended for ECMO, Dr. Bizzarro, director of the Pediatric ECMO Program—and a team of physicians, nurses, physician assistants, nurse practitioners, perfusionists and respiratory therapists--plan and carry out the necessary procedures, care and monitoring of the patient. A pediatric surgeon inserts large plastic tubes into the large blood vessels of the patient’s body. These tubes are then connected to the ECMO machine to carry blood to and from the machine. The machine oxygenates the blood and takes over most of the work of the lungs and, in some cases, the heart.

The baby stays on the ECMO machine in the ICU from several days to weeks, and is cared for by ECMO- trained physicians, physician assistants and neonatal nurse practitioners, as well as a dedicated bedside nurse. A dedicated perfusionist monitors the ECMO machine 24 hours a day. As with any artificial support, there are risks involved with ECMO, and these risks increase as the duration of support increases. Risks include blood clots, infections and bleeding.

Before ECMO was available, many babies with these breathing and heart issues did not survive. Approximately 75 percent of the newborns requiring ECMO for respiratory failure now survive and are able to leave the hospital. When an infant does not survive, it may be due to a breathing problem that is irreversible. ECMO will not help in this situation as it is a support system and does not fix the underlying problem.

The ECMO program at Yale has been in existence since 1992. In September 2010, the program was recognized for its focus on quality of care, and its dedication to the training and continuing education of its staff, with a Center of Excellence in Life Support award from the Extracorporeal Life Support Organization, an international consortium of health care professionals and scientists.

Sensitivity to the needs of patients and families is especially important throughout this type of treatment. Dr. Bizzarro often visits his newborn patients on his own time to check on them. The infants demand focused and continuous attention and care. The parents of the infant travel a unique and complicated journey, and need constant communication and understanding.

“I attempt to comfort them as best as I can and do not presume to know what they are going through. I never communicate to the parents from the vantage point of knowing their feelings,” Dr. Bizzarro said. “They must know everything medically related to their newborn that I can communicate, and our team supports the parents with our expertise and devotion to treating their infant with the highest standards and compassion.”

The neonatal ICU team facilitates an environment in which doctors, nurses, perfusionists, respiratory therapists and parents can come together with the same goal and focus. “We must get on the same page together to build mutual trust,” Dr. Bizzarro said.

A family support specialist works in the unit to support relationships between parents and physicians, and the concept of family- and patient-centered care. Renee Molnar, a parent whose twins were patients in the neonatal ICU, has served the unit in this role. In addition to forming a unit-based Family Advisory Board that meets frequently, Molnar developed a scrapbooking program to create memories, a “onesies” decorating activity, and get-togethers that feature a meal and former parent speakers. “We provide a forum for the parents to talk about what they are going through,” she said. The board has plans to start a group for fathers as well.

Members of the neonatal ICU team, including ICU staff, social workers and patient advocates, also meet regularly to lend support to each other. “We are exposed to stress consistently, and keeping our team functioning at its best sometimes means getting together outside of the hospital,” Dr. Bizzarro said. The goal is to do whatever they need to stay focused on employing compassion, expertise and teamwork to take care of these incredibly vulnerable and precious patients.