Preparing Your Child for Bladder Neck Reconstruction Bladder neck reconstruction (BNR) often is described as the most challenging surgical undertaking along the exstrophy journey by families. BNR is the culmination of many years of planning, hoping, and for many families, praying. Although BNR often is thought of among patients and families as the “getting dry” surgery, in reality, there are two equally important goals of BNR: urinary continence and protection of kidney function. Optimal surgical outcome can be improved if both the child and family are well prepared pre-surgically for the post-surgical behavioral and emotional challenges. Over the past four years, the Johns Hopkins Hospital Department of Pediatric Urology has established a multidisciplinary team of health care professionals who evaluate a child and family's readiness for BNR and help the child and family prepare for the post-surgical work that will allow for favorable continence. The Hopkins BNR preparation program consists of the following components: pelvic muscle conditioning, voiding routine establishment, bowel management, hydration routine establishment, and assessment of behavioral readiness. Pelvic muscle conditioning is believed to be important in supporting the surgically created bladder neck. Biofeedback is used to teach the child how to use his or her pelvic floor muscles to help hold urine in and to relax the muscles to let the urine flow out easily when on the toilet. After a child is taught how to contract and relax the pelvic floor muscles using biofeedback in a clinic environment, home practice is needed to train the pelvic floor muscles to contract and relax volitionally. Parents are asked to establish a strict behavior modification program, which allows their child to try to evacuate urine every two hours. Management of bowels is also an important factor in the child being able to void more easily and not have to “strain” to push the urine out past stool in the rectum. Assessment of a family and child's behavioral readiness is evaluated using a variety of assessment strategies including parent and child interviews, play therapy, and behavior surveys. It is very important for success that a child's personality traits be understood so that pre-surgical preparation can be individualized and tailored appropriately. Parent readiness is also discussed, so that parents have a realistic idea of the work that is involved in assisting their child in recovering from BNR. At Hopkins, parents are advised to begin preparing for BNR about one year prior to the proposed surgical date. For families that live locally, clinic appointments generally are set up every 6 to 8 weeks to monitor the child's progress and to provide recommendations for preparation. For families that do not live close to Hopkins, we recommend that an initial appointment be set up for 3 or 4 consecutive days of outpatient appointments with 1 or 2 additional trips for a 2-day training period before the surgical date. The Hopkins pre-BNR program is a no pain clinic and includes no invasive procedures. In order to do biofeedback, three sensors will be placed on your child, one on the hip and the other two on the skin of the buttocks near the anal opening. These do not hurt, but often feel odd to children at first and take some getting used to. These sensors are used to monitor the function of the child's pelvic floor muscles, both voluntarily and during voiding. We also will use a hand-held sonogram to assess how much urine your child's bladder holds both before and after voiding. The sonogram is one of the first steps in assessing a child's ability to fully empty his or her bladder completely. An important part of this process is the involvement of the child psychologist and the child life specialist. The medical aspects of presurgical training and post-surgical adherence depend largely on the child's readiness for such an immense undertaking. It is important for families to keep in mind that, during a typical closure, the family's greatest challenge post surgically is keeping the child still and quiet during the recovery period. Alternately, BNR recovery requires rigorous adherence to a 1 to 2 hour toileting regimen, daily exercise routines, fluid ingestion (Continued on page 3) Page 3 Volume 1 Winter 2008 requirements, and stool monitoring. In other words, the year following BNR is the most labor intensive and emotionally taxing period in the entire exstrophy experience. In addition, it is important for children and their families to understand that pre-surgical training is not a guarantee of post-surgical continence. The child needs to be properly prepared for all possibilities and options, including continent stoma or intermittent catheterization. It is imperative that children be developmentally ready to deal, with the help of their families and our clinic staff, with whatever outcome is achievable for that particular child. The behavioral and emotional support provided by our clinic psychologist and child life specialist are integral parts of the program and help families and children deal with the challenges and demands they will face during the preparatory and postoperative periods. As families face this challenging and exciting milestone in the exstrophy journey, the Hopkins team is available to provide various forms of support so that children can achieve the most optimal voiding and emotional outcomes and so that that the family comes through the process with minimal stress and maximal congruency. Johns Hopkins Hospital, 11.08 |