Babyface: A Story of Heart and Bones (McDermott 2000) is a mother's personal account on dealing with her baby's birth defect called Apert Syndrome, a craniofacial anomaly. Patients with Apert Syndrome typically have tall or high skulls, bulging eyes with the eyelids abnormally tilted at the sides, sunken middle facial area, and unusual webbing of fingers and toes (Apert Syndrome 2011). As McDermott describes in her book, children with this condition share some similar characteristics with patients suffering from Velocardiofacial Syndrome (VCFS). Similarities include elongated facial features, small nostrils, wide nose, open mouth expression, and cleft palate, among others. Aside from these physical manifestations, the National Craniofacial Association concurs that children suffering from both ailments experience vision problems, have slower learning abilities, and have speech and learning difficulties (Apert Syndrome 2011).
Velocardiofacial Syndrome is a genetic disorder that is "characterized by cleft palate, velopharyngeal dysfunction, speech-language disorders, cardiac anomalies, and cognitive-behavioral disorders" (Baylis et al., 2008), among others. Because of these conditions, living circumstances of children with VCFS are affected as they have difficulty in expressing themselves due to hypernasality and poor articulation skills as compared with children of the same age but without speech problems (Baylis et al., 2008). Highly related to this is the cognitive development of children with VCFS. In a report prepared by Baylis et al. (2008), it shows that children with low mental abilities experience delays in speech development and have very limited vocabulary as compared with children suffering from other types of craniofacial defects. This also means that whatever learned speech they have acquired will be difficult to "unlearn" because of related hearing problems, which affect how they hear and produce sounds.
Otitis media also poses a problem on VCFS patients' hearing ability, as they are more prone to hearing loss and receiving "incomplete or distorted auditory signals" (Baylis et al., 2008). Phonological learning is another aspect of speech impairment that affects children with VCFS. Because of decreased abilities to hear correct phonology of letters and words, articulation, speech perception skills, unintelligible speech, and word-learning abilities of children are affected (Baylis et al., 2008).
Despite the seemingly grim prognosis for children with craniofacial defects, the good news is that there are methods to correct the problems. Hypernasal speech, for instance, can now be corrected though surgery. In cases when cleft palate is present, a secondary reconstructive surgery is advisable to repair the palate as well as address other possible causes of speech disorders. The affected child must then attend speech therapy sessions to aid progress with articulation skills.
As McDermott points out, these children may look different physically and act in a different way than able-bodied children, but time came when, through acceptance and understanding, they stopped focusing on the syndrome that affects their son, but on their son alone. Regardless of speech defects and countless surgeries, the bottom line is still how human and alive children with VCFS are and that they should be treated the same way as other regular children.
Works Cited
"Apert Syndrome". The National Craniofacial Association. 2011. Web. 30 Nov 2012.
Baylis, Adriane, Benjamin Munson, and Karlind T. Moller. "Factors Affecting Articulation Skills in Children With Velocardiofacial Syndrome and Children With Cleft Palate or Velopharyngeal Dysfunction: A Preliminary Report." Cleft Palate-Craniofacial Journal 45.2 (2008): 193-07. Web. 29 Nov 2012.
McDermott, Jeanne. Babyface: A Story of Heart and Bones. Maryland: Woodbine House. 2000. Print.
