Parental experiences about bladder exstrophy of their children

• Published in: Journal of pediatric urology 2007, Vol.3, p.S95-S95
• Main Author: Estelle AUBRY, Salima MAHAMMED , Eleonore DELARUE , Julia LAM THAM , Bernard HERBAUX and Rémi BESSON
• Format: Article
• Language: English
• Subjects: Pediatrics; Urology
• ISSN: 1477-5131; 1873-4898
• DOI: 10.1016/j.jpurol.2007.01.175

PURPOSE Now the sonographic diagnosis of bladder exstrophy has been documented and prenatal diagnosis is possible. It must be important to joint together objective and quantified arguments to make rational decision. In this study parental experiences of the care of children with bladder exstrophy were evaluated. MATERIAL AND METHODS We studied 30 families and 23 were contacted. The data assessed included how the parents discovered the malformation, what is for them the advantage of a prenatal diagnosis, how they currently live with the malformation, which therapeutic possibilities were proposed in the event of a prenatal diagnosis and their point of view on the termination of pregnancy. RESULTS Of the parents, 91,3% discovered the malformation at the birth and 86,9% of the births took place in general hospitals. Two thirds of the parents would have preferred to have a prenatal diagnosis. The therapeutic alternatives proposed by parents were specialist counselling in 44%, birth in surgical centres in 36%. Uniquely a quarter of parents had had a bad experience of their children's malformation at the date of review. In a first birth separation was a major difficulty more for the mothers who did not have a prenatal diagnosis. In the long term, urinary incontinence was the main complaint for parents. Only 12% of parents think that a proposal for the termination the pregnancy is justified. CONCLUSIONS We believe counselling with a paediatric urologist has an important role for parents after a prenatal diagnosis of bladder exstrophy