The advent of PubMed and parent support groups has served to educate parents and empower them to participate in the decision making process for their children. This awareness is generally advantageous, but it sometimes complicates our job, particularly if the expectations of the family are unrealistic. Authors of publications naturally select photos of their most impressive outcomes, and parents may not recognize differences in the size or stage of their child’s lesions that may prevent the most favorable outcome. What we as surgeons may construe as an excellent outcome-for example, having preserved all branches of the facial nerve entwined in a massive vascular malformation of the face-may be construed as less of a success by a parent who finds the residual mandible and soft tissue hemihypertrophy cosmetically unacceptable. These differences in perception of outcome are expected for the two parties, given their varied backgrounds and expectations.
Explore This IssueJune 2009
It is understandable that parents seek the best medical care available to their child. The probing glances, awkward stares, and questions that their child’s anomaly evokes are a part of a family’s daily life that they fervently hope will end with medical intervention. I find that reading Web recollections written by children with facial anomalies who spend time at summer camp with other children with similar conditions are very revealing. They relate the joy they experience when being among a sea of children with similar anomalies allows them to forget about their differences and just enjoy the camp experience as a child should. Their stories give us a glimpse of how their vascular anomaly molds their everyday life.
Our aptitude as physicians treating patients with vascular anomalies extends beyond our surgical and medical armamentarium. I fondly recall being a resident, many years ago, in the clinic of the late Dr. Janusz Bardach, a pediatric plastic and reconstructive surgeon at the University of Iowa, who specialized in cleft lip and palate repair. To Dr. Bardach, every patient was beautiful, and when he told them of their beauty, with his compelling accent, they believed him no matter how far their facial appearance deviated from what society regards as aesthetically pleasing. Instilling confidence about a child’s inner beauty, that beauty found deeper than their skin and muscular facial envelope, is an art that he mastered, and his patients benefited from it just as much as they gained from his surgical successes.
Importance of MVACs
The creation of multidisciplinary vascular anomalies clinics (MVACs) is a great contribution to the care of these patients. MVACs, often modeled after the renowned clinic directed by Drs. John Mulliken and Steven Fishman at Boston Children’s Hospital, afford the opportunity for physicians from different specialties to share their expertise and to create a unified approach to the care of patients. Physicians staffing these clinics have a keen interest in treating vascular anomalies, in educating physicians, and in conducting clinical as well as basic science studies.