As the father of a child born with a severe anomaly, Jerry Adler has witnessed nurses expertise first-hand. They repeatedly saved his sons life and contributed to his well-being. As a result, the award-winning writer and editor for Newsweek advocates the important role nurses play in healthcare.
Adlers son, Max, was born with a bilateral hemifacial microsomia, a congenital disorder that impairs the development of the lower half of the face, including the mandible, ears, and sometimes the mouth. Severity of the condition varies, but can result in critical respiratory difficulties.
Before Maxs birth, Adler had limited contact with healthcare professionals and had never been hospitalized himself. Having a child with a serious birth defect enrolled Adler in a crash course in the realities of the healthcare milieu.
Max wasnt breathing when he was born, says Adler. His life was saved by a pediatric resident who had been a NICU nurse and was able to thread a breathing tube down into his trachea after the senior resident wasnt able to. That was a revelation to me right away. Thats the kind of thing that a nurse does all the time.
After his birth, Max spent several months in the NICU at St. Vincents Hospital in New York City before coming home. During Maxs treatment, Adler watched nurses perform many of the duties doctors are portrayed as performing on TV and brought the issue up in his March 9 article The Nurse Will See You Now, which can be viewed at www.newsweek.com/id/187004.
A NICU is basically run by nurses that was apparent to me very early, says Adler. Nurses were the people who we related to most of the time about daily care, and they were the ones who saw him through his first few months.
After Max was brought home, he needed around-the-clock skilled care from home care nurses. He required frequent suctioning, tube feedings, care for his tracheostomy and gastric tube sites, among other specialized interventions.
Theres no doubt that he was kept alive in those early years by nurses taking care of him, says Adler.
Adler also praises the role of physicians and nurses in his sons complex course of treatment. Nurses from units such as surgical, PACU, and PICU cared for Max throughout his 40-plus surgeries, most of which were performed at the Institute of Reconstructive Plastic Surgery NYU Langone Medical Center in New York City.
Some of the surgeries involved hospitalizations as long as four or five weeks, and nurses were essential to his care and well-being through all those procedures, says Adler.
A Long RoadPatricia D. Chibbaro, RN
Children born with cranial facial anomalies, such as hemifacial microsomia, often face a long, complicated treatment plan and multiple surgeries that continue through adulthood. Surgeries performed to correct hemifacial microsomia can include reconstruction of the ear, lowering the upper jaw to match the opposite side, lengthening the lower jaw, and adding bone and extra soft tissue to build a more symmetrical appearance. A tracheostomy and gastric tube feedings also might be necessary, as in Maxs case.
Nurses who coordinate the many specialists, treatments, surgeries, home care, and follow up are key to successful outcomes for these children. The nurse credited by name in Adlers article for streamlining Maxs complex care is Patricia D. Chibbaro, RN, MS, CPNP, a pediatric NP at the Institute of Reconstructive Plastic Surgery. Chibbaros multifaceted nursing role with Max involved preparing him and the family for his many surgeries, helping staff with his care post-op, collaborating with numerous specialists, and ensuring everyone involved in Maxs care was on the same page.
Families with children with chronic conditions always need a person who pulls everything together and is there for them when they have concerns or need help, says Chibbaro.
Because as many as 80% of craniofacial anomalies can be detected prenatally, Chibbaro frequently begins her relationship with families during pregnancy. Her care often continues throughout childhood and young adulthood. Other complex issues that need to be addressed and re-addressed as these children grow may include problems with breathing, eating, hearing, vision, speech, orthodontics, and cranial shape. This requires coordinating many specialists and procedures, such as ophthalmologists, orthodontic dentists, speech specialists, and multiple physicians and surgeons. Chibbaro also works as part of a mental health team that addresses ongoing psychosocial issues faced by these children.
The aesthetic aspect is so huge, especially when they start school, says Chibbaro.
Tragically, Max accidently died in 2008 after he fell off a platform and was hit by a train. But the surgeries and nursing care he received through the years helped him live as normal of a life as possible. Although Max was not able to speak or eat normally, he attended Eugene Lang College in New York City, played sports, and traveled internationally with the assistance of nurses who accompanied him. He even competed on the college debate team, communicating by using sign language interpreters and a Blackberry-like device.
I am grateful both to the individual nurses who took such good care of Max and to the profession as a whole, says Adler.