One question parents of children with CdLS ask pediatricians is, "How will my child do?" Pediatric geneticist Dr. Antonie Kline answered that question at the CdLS Foundation's Boston Convention with results from research by her and other professionals at the Jefferson Medical College, Philadelphia. Dr. Kline pointedly thanked parents for their children's participation in these studies.
Older literature on development in children with the de Lange syndrome supplied not only dismal but also inaccurate information. The results of Dr. Kline's research offers a much more optimistic outlook for parents with newborns diagnosed with CdLS. Using revised tests measuring intelligence, development, vocabulary and behavior, she reported that formal assessments done on one hundred children with CdLS revealed higher scores in all four areas. For instance, the average IQ score of fifty-three indicates mild to moderate mental retardation for children with CdLS rather than previously reported scores showing mental retardation in the moderate to severe range.
Early Intervention Makes a Difference
What made the difference? Dr. Kline points to a comparison in children born before and after 1980, noting that 1980 signals the time when U.S. government funding for early intervention became well-established. The post-1980 scores in intelligence, development, vocabulary and behavior all reveal the benefits of early intervention as well as a more positive attitude toward servicing children who are developmentally delayed. Average scores of individuals born after 1980 were consistently at least ten points higher than scores of children born before 1980.
Compared with their skills in other areas, children with CdLS showed strengths in problem-solving, seeing and remembering objects and find motor coordination. However, verbal comprehension and expressive language skills were weak. Instead of relying on traditional verbal instruction (what children hear), Dr. Kline suggested that early intervention with computers, pictures and three-dimensional objects (interaction with what children see and handle) offers a means to strengthen these language skills.
Dr. Kline's best news came at the end of her presentation when she revealed results of a questionnaire answered by ninety-two respondents. These results became the source of a long-awaited developmental chart showing when children with CdLS reach certain developmental milestones. These milestones mark attainments using gross motor skills, fine motor skills, personal and social skills, and speech skills. The chart reveals that the greatest delays occur in speech and communication.
"All children with CdLS make progress throughout their lifetime," assured Dr. Kline, "although some more slowly but without regression."