Independent walking and balance in children with CHARGE syndrome

Abstract

Children with CHARGE syndrome (CWCS) are born with multiple physical disabilities, several of which impair balance and the onset of motor milestones. Early motor development problems can include delayed independent walking, which has been found in CWCS. In addition, few studies have examined balance in CWCS and these studies have been limited in scope, necessitating a more comprehensive examination of balance in this population. Motor development occurs as a progression of stages as represented by Seefeldt’s conceptual model. As such, it is essential to examine the association of early development of foundational skills, such as balance, with the onset of motor milestones as they are building blocks to motor competence. The aims of this study are to (1) examine the differential effects of children with and without CHARGE syndrome on balance and (2) examine the association of age of walking to these balance measures. In this study, 27 CWCS and 22 children without CHARGE syndrome, aged 7 to 16 years, were assessed on four components of balance including anticipatory control, reactive postural control, sensory orientation, and dynamic gait using the shortened version of the Balance Evaluation Systems Test (mini-BESTest) and parental reported age of independent walking. Their balance and age of walking were compared to 22 typically developing peers of similar age and gender distribution. Results revealed that CWCS walked three times later than their peers without CHARGE syndrome and had significant deficits on all balance systems assessed with the largest difference occurring in anticipatory control. Anticipatory control is critically important in maintaining static and dynamic postural control. These results indicate a critical need for early functional balance training and compensatory strategies in CWCS.

Motor Competence in Children with CHARGE Syndrome

“…The locomotor skills of the hop and skip are two of the most difficult gross motor skills and require the need for sufficient balance to produce these motor movements. Haibach and Lieberman (2013) and Haibach-Beach et al (2020) have found that children with CHARGE syndrome have limited balance ability, which can directly affect performance on locomotor skills. Furthermore, balance was reported by parents of children with CHARGE syndrome as a rate limiter impeding their child's ability to develop independent walking (Foster et al, 2020).…”

“…Even when these children return from their medical leave, they are often excused from physical education for extended periods of time (Hilgenbrinck et al, 2020). These long absences from physical education and movement opportunities, which would typically improve their gross motor skill performance, may add to existing challenges with balance (Butterfield & Ersing, 1988;Haibach and Lieberman, 2013;Haibach-Beach et al, 2020;Perreault et al, 2020) and vestibular function (Möller, 2011) if they are not provided adapted and individualized services. These balance and vestibular challenges exacerbate the impact of the multiple surgeries and prolonged hospital stays.…”

“…Balance is a common challenge for individuals with CHARGE syndrome (Haibach & Lieberman, 2013; Haibach-Beach et al, 2020) likely due to their sensory deficits in both vision and the vestibular system (Möller, 2011). Reduced sensory input in multiple sensory systems greatly reduces their compensatory strategies causing the maintenance of balance to be quite challenging (Assländer & Peterka, 2014).…”

Affordances for Motor Development in the Home Environment for Young Children with and without CHARGE Syndrome

“…It is also important to note that due to the delayed gross motor development of children with CHARGE syndrome, there was a particularly small sample size of participants who were able to independently walk. Children with CHARGE syndrome typically walk independently 30 months later than their peers without disabilities [22]. As such, future research should also examine broader age groups in families with children with severe disabilities.…”

“…Children with CHARGE syndrome walk an average of 25 months later than their sighted peers [19,20]. One reason for this late onset for independent walking is that children with CHARGE syndrome experience more balance issues compared to their peers without disabilities [21,22]. This delayed walking can have drastic impacts on other gross motor skills, such as locomotor and object control skills [23,24], which are critical for engaging in many physical activities.…”