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There are many ways you can help children and their families get the care they need.
Initial surgical reconstruction of bladder exstrophy is, perhaps, the most critical step in your child’s care. There are varied approaches for both technique and timing for this initial surgery.
There are two main approaches to the repair of bladder exstrophy:
1. Complete Primary Repair of Exstrophy (CPRE), in which both the bladder is closed and the epispadias is repaired (entire urethra is closed into a tube) at the same time. Children who undergo CPRE will likely require additional surgery during later years to manage urinary incontinence and vesicoureteral reflux (VUR).
2. Modern Staged Repair of Exstrophy (MSRE) involves three surgeries for reconstruction of the bladder.
At Boston Children’s Hospital, our preference is to repair your child’s exstrophy in a single operation that combines closure of both the bladder and urethra (epispadias repair) at the initial surgery. This is called complete primary repair of bladder exstrophy (CPRE. The bladder outlet (bladder neck) is narrowed and the external genitalia also are reconstructed as part of CPRE.
A complete repair allows for:
earlier normal bladder function, which leads to optimal bladder growth and development
your child to grow and develop prior to performing the complete primary repair
the family to bond with the child prior to major surgery
At Boston Children’s Hospital, we are working to bring safer and more effective treatments to our patients with bladder exstrophy. Current research includes:
Antenatal (before birth) intervention, such as covering the exstrophy tissue or repairing the exstrophy itself in utero, is being considered. Investigational efforts in an animal model have proven the capability of taking a biopsy of the fetal bladder tissue, expanding this tissue in the laboratory and having it available for postnatal return to the newborn if deemed necessary.
Detailed analysis of the soft tissue and bony anatomy of the pelvis through an MRI is a staple in the pre- and post-operative CPRE evaluation of children with bladder exstrophy. This analysis will help assess attempts to recreate normal pelvic anatomy, and correlate findings with clinical aspects of outcome, such as urinary continence.
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”