Growth in children with Bohring-Opitz Syndrome (BOS) is different from healthy children. Children with BOS are characterized with IUGR (Intrauterine Growth Retardation) and severe feedings problems, as well as failure to thrive. With this in mind, we think it is important to take a different view on the growth of children with BOS. We gave parents and caregivers of children with BOS, who are united in our support group, the opportunity to contribute to the online survey “Growth Charts for Children with Bohring-Opitz Syndrome.”
The outcome is not surprising for parents and caregivers of children with Bohring-Opitz Syndrome. The measurements (weight and length) for girls, as well as boys, are well below the 3rd percentile when comparing the data to the ‘WHO Child Growth Standards.’ Therefore, there may be multiple reasons for this phenomenon: IUGR (Intrauterine growth restriction), failure to thrive due to common severe feeding intolerance, cyclic emesis, recurring infections, multiple surgeries, the recovery of which can have a delayed growth impact on children with Bohring-Opitz Syndrome. Other possible causes, such as metabolic disorders, are still unexplored.
We hope that this research initiates more investigation with a greater amount of participation from professionals in the medical field. Growth charts that are specific to children with Bohring-Opitz Syndrome could become important tools for routine medical follow up, as well as during monitoring when undergoing growth promoting treatments.
We thank the children and their parents for participation in this study.