Materiały źródłowe

• #1 Bladder Exstrophy – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK563156/

  Bladder exstrophy is a rare congenital anomaly characterized by a spectrum of anomalies involving the ventral body wall, urinary tract, genitalia, bony pelvis, spine, anus, etc. […] Precise surgery to provide acceptable continence rates remains the greatest challenge for pediatric surgeons. […] Two reconstructive approaches, the modern staged repair of exstrophy (MSRE) and the complete primary repair of exstrophy (CPRE), are commonly adopted by surgeons across the world. The aims of the surgical treatment are to provide a competent receptacle (bladder) for storage, to prevent upper tract damage, and to provide cosmetically acceptable genitalia providing good functional outcomes in terms of continence and sexual function. […] Surgical treatment of classical bladder exstrophy not only involves the bladder closure, but it also includes procedures such as epispadias repair, bladder neck reconstruction, bladder augmentation, and ureteric reimplantation.

• #1 Bladder Exstrophy | Children’s Hospital of Philadelphia

  https://www.chop.edu/conditions-diseases/bladder-exstrophy

  Treatment for bladder exstrophy includes surgical repair. The goal of treatment is to optimize urinary control, to preserve normal renal function, and to optimize the appearance and function of the external genitalia. […] Bladder exstrophy can be repaired with reconstructive surgery. If your child is treated at Childrens Hospital of Philadelphia, their surgery will be done using an approach called the complete primary repair of exstrophy (CPRE). […] CPRE allows us to achieve the goals of surgical correction all in one operation: Bladder closure (moving it inside the body), Epispadias repair with reconstruction of the genitalia, Bladder neck reconstruction (reconstruction of the urinary sphincter muscles), Pelvic osteotomy (closing the pelvic bones). […] Closing the bladder early allows the bladder to cycle (fill and empty urine) which helps with bladder growth and development. Surgery is typically performed within 6-12 weeks after delivery.

• #1 Bladder exstrophy – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/bladder-exstrophy/diagnosis-treatment/drc-20392198

  The treatment for bladder exstrophy is surgery after birth. You may hear it called reconstructive surgery. The goals of surgery are to: […] If healthcare professionals spot bladder exstrophy during pregnancy, plans often are made for surgery right after birth. If the condition is found after a baby is born, the baby receives care in a special hospital unit. The baby may need to be transferred to a center that has experience treating bladder exstrophy. In either situation, healthcare professionals cover the newborn’s bladder with a clear plastic dressing to protect it. […] There are two main ways to do bladder exstrophy surgery. It’s not clear whether one way is much better than the other. Research is ongoing to refine the surgeries and study their long-term results. The two types of surgery are:

• #1 Bladder exstrophy – Diagnosis and treatment – Mayo Clinic

  https://www.mayoclinic.org/diseases-conditions/bladder-exstrophy/diagnosis-treatment/drc-20392198

  Complete repair. This surgery is called complete primary repair of bladder exstrophy. A surgeon closes the bladder and the stomach area and repairs the urethra and outer sex organs. This single surgery can be done soon after birth. Or it can be done when the baby is around 2 to 3 months old. […] Staged repair. The full name of this approach is modern staged repair of bladder exstrophy. Staged repair involves three surgeries. Often, the first surgery is done within 72 hours after birth. The second is done at age 6 to 12 months. And the last is done at 4 to 5 years. […] After surgery, many children gain some bladder control. If your child had complete primary repair surgery, your child likely will need bladder neck surgery to improve bladder control. Sometimes, children need to have a tube inserted into their bladders to drain urine. This is called catheterization. More surgeries may be needed to improve urination or repair the genitals as your child grows.

• #1 Current management of classic bladder exstrophy in the modern era | African Journal of Urology | Full Text

  https://afju.springeropen.com/articles/10.1186/s12301-023-00356-4

  The paramount goal of surgical management of classic bladder exstrophy is a successful primary closure as it is associated with decreased overall costs, decreased inflammation and fibrosis of the bladder, improved bladder growth, and decreased need for urinary diversion. […] Starting in the 1990s, interest in combined, all-inclusive repairs of exstrophy were rekindled for older children with failed primary closures and eventually in neonatal primary closures. […] The modern staged approach separates the repair into three stages: (1) Primary closure of bladder and abdominal wall, (2) epispadias repair, (3) continence surgeries. […] The potential advantage of CPRE is minimalization of overall number of surgeries, hospitalizations, and associated costs of exstrophy care and improve continence rates without the need for formal bladder neck reconstruction.

• #1 Bladder Exstrophy | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/121871

  Among the reconstructive procedures, the two procedures that are commonly performed by pediatric surgeons across the globe are modern staged repair of exstrophy (MSRE) and complete primary repair of exstrophy (CPRE). […] (I) modern staged repair of exstrophy (MSRE): the procedure was developed and refined by Jeffs and Gearhart. The main principle is to perform a staged repair (in three separate procedures) at appropriate times. The ideology is each procedure will provide some degree of outlet resistance and will help the bladder to grow. […] (II) Complete primary repair of exstrophy (CPRE): also is known as Mitchell’s repair as it was first performed by Michael Mitchell. The procedure aims at performing the complete repair, including bladder turn-in, bladder neck repair, and epispadias repair in a single sitting. The ideology is the initiation of early bladder cycling to ensure the optimal development of the bladder.

• #1 Bladder Exstrophy Program | Nationwide Children’s Hospital

  https://www.nationwidechildrens.org/specialties/urology/bladder-exstrophy-program

  Bladder exstrophy is a rare and complex condition, but it is not an emergency. You do not need to rush into surgery. At Nationwide Childrens Hospital, our approach gives you time to bond with your child, time to adjust, and time to develop a plan with our experts. […] Our Bladder Exstrophy Program offers a two-step treatment approach for newborns that is truly unique in the U.S. The first surgery to close the bladder takes place when your child is a few weeks to a few months old. Then, between ages one and two, the second procedure, called the Kelly Procedure, creates the sphincter muscles, to more actively allow the bladder to grow. The Nationwide Children’s approach leads to shorter hospital stays and better continence outcomes. Our goal is to help children achieve urinary control at a younger age, so they can focus on being kids, not their condition.

• #1 Bladder Exstrophy | Nationwide Children’s Hospital

  https://www.nationwidechildrens.org/conditions/bladder-exstrophy

  Bladder exstrophy is treated with surgery which is done in stages. The first procedure, to close the bladder, is done once the baby is established on feeding and has started to gain weight, somewhere between 2 weeks and 3 months of age. Unlike most centers in the United States, at Nationwide Children’s Hospital, we are often able to close the bladder without performing an osteotomy (cutting the hip bones to reshape and close the pelvis). Whether or not an osteotomy is done, children usually are in the hospital for 6-10 days. […] The next step is called the Kelly procedure. This involves rebuilding the soft tissue of the bladder neck. It uses existing muscle and soft tissue to create the new neck of the bladder. This ring of muscle then works like a sphincter to open and close bladder. This helps to control the flow of urine. The Kelly procedure creates a sphincter because a natural one did not form. The Kelly procedure is typically done around 1-2 years of age and children are in the hospital for about 5-7 days.

• #1 Bladder Exstrophy | Nationwide Children’s Hospital

  https://www.nationwidechildrens.org/conditions/bladder-exstrophy

  If a child has a small, unhealthy bladder that does not grow as the child gets older, a bladder augmentation may be needed. In this procedure, a piece of intestine is used to increase the size of the bladder. With the Kelly approach, the number of children requiring an augmentation is much less than with other techniques of exstrophy management. […] Children born with bladder exstrophy will need surgeries to repair the birth defect. These surgeries will help: Gain bladder control (become toilet trained), Preserve kidney function, Repair genital appearance, Help gain sexual function. […] For many children (about 75%), the Kelly procedure is considered the most major operation to treat the condition. Additional treatments may include procedures to repair the appearance of the external genitalia, abdominal wall and control of their urine in the daytime. Nighttime continence may take longer to develop. In some of the boys, the end of the penis will need some further surgery to bring the urethra to its tip.

• #1 Bladder Exstrophy – StatPearls – NCBI Bookshelf

  https://www.ncbi.nlm.nih.gov/books/NBK563156/

  The issue can be solved by performing an osteotomy. […] A good proportion of patients require augmentation of the bladder with other conduits. […] The most commonly performed procedures include ileocystoplasty, colocystoplasty, and gastrocystoplasty. […] Postoperative management of the child with bladder exstrophy is extremely crucial. […] The immediate pain is managed by the epidural analgesia. […] Following discharge, it is important to ensure a regular follow-up. […] The most important factor in the quality of life of patients with exstrophy bladder is the degree of urinary continence. […] While a pediatric surgeon is always involved in the care of patients with exstrophy bladder, it is crucial to consult with an interdisciplinary team of specialists.

• #1 Bladder exstrophy // Middlesex Health

  https://middlesexhealth.org/learning-center/diseases-and-conditions/bladder-exstrophy

  Standard care after surgery includes: […] Help staying still, also called immobilization. After surgery, infants need to wear devices that keep their lower legs still during healing. The amount of time a child needs to stay still varies. But usually it’s around 4 to 6 weeks. […] Pain management. Healthcare professionals can place a thin tube into the spinal canal during surgery to deliver pain medicine directly to the area where it’s needed. This gives babies consistent pain control and lessens the need for more-powerful pain relievers called opioids. […] After surgery, many children gain some bladder control. If your child had complete primary repair surgery, your child likely will need bladder neck surgery to improve bladder control. Sometimes, children need to have a tube inserted into their bladders to drain urine. This is called catheterization. More surgeries may be needed to improve urination or repair the genitals as your child grows.

• #1 Bladder Exstrophy | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/121871

  Other Procedures: It has been highlighted in various studies that the extrophied bladders fail to grow, even when primary turn-in is performed at an early age. Therefore, a good proportion of patients require augmentation of the bladder with other conduits. The most commonly performed procedures include ileocystoplasty, colocystoplasty, and gastrocystoplasty. Although each has its own merits and demerits, gastrocystoplasty offers some additional advantages of few metabolic complications, physiological superiority in children with deranged renal function, and less risk of calculi formation.

• #1 Bladder Exstrophy | Nationwide Children’s Hospital

  https://www.nationwidechildrens.org/conditions/bladder-exstrophy

  After surgery, doctors check how well the bladder is working. If your child has trouble staying dry, they might need more tests. These tests happen while the person is asleep (under anesthesia). Sometimes, doctors put bulking agents into the bladder. It helps the bladder hold urine better. […] If your child still cant stay dry, they might need another surgery. Heres what it involves: Bladder Neck Reconstruction: Fixing the part where the bladder connects to other tubes, Ileocystoplasty: Making the bladder bigger using a piece of the intestine, Appendico-Vesicostomy (Mitrofanoff Channel): Creating a new way for pee to come out. Its like a shortcut. […] About 20% of patients might need this surgery. People who have this surgery will use a catheter (a thin tube) to empty their bladders regularly. It becomes part of their daily routine.

• #1 Bladder exstrophy: An overview of the surgical management

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3160059/

  The surgical management of urinary bladder exstrophy is challenging. This paper describes the personal experience in a tertiary care hospital over a period exceeding a quarter of a century. […] The stages/procedures used in the surgical reconstruction of bladder exstrophy included bladder closure with anterior abdominal wall reconstruction, bladder neck repair, ureteric reimplantation, epispadias repair and augmentation colocystoplasty in various combinations. […] Surgical management of bladder exstrophy demands patience and perseverance. It is possible to provide all patients with socially acceptable continence with bladder neck division and catheterizable continent stoma as the last resort. Urodynamic assessment has emerged as an essential tool in the follow-up evaluation of these patients. Anticholinergic medication with imipramine or oxybutinin is a useful adjunct in the overall management.

• #1 Bladder Exstrophy | Boston Children’s Hospital

  https://www.childrenshospital.org/conditions/bladder-exstrophy

  Other centers may prefer a staged approach to bladder exstrophy care, where the bladder closure, bladder neck reconstruction, and epispadias repair are divided into separate time points. […] After initial treatment for bladder exstrophy, your child will require lifelong follow-up. Care is ongoing and can involve a range of testing to evaluate your child’s growth and development, urinary continence, kidney function, and sexual and reproductive health. […] The experts in our Bladder Exstrophy Program provide exceptional pediatric care. Our team includes physician specialists in urology, nephrology, orthopedic surgery, anesthesiology, radiology, and nuclear medicine, as well as nurses, social workers, and child life specialists who will care and support you and your child at every step, from diagnosis through treatment, and even after your child returns home.

• #1 Bladder Exstrophy | Diagnosis, Treatment & Outlook

  https://www.cincinnatichildrens.org/health/b/bladder-exstrophy

  Bladder exstrophy is treated with surgery by a pediatric urologist. A pediatric orthopedic surgeon will work with the urologist to put the childs pubic bones in the proper place. […] Different hospitals offer different approaches to surgery for bladder exstrophy. Sometimes the repair can take place in one surgery. At other times the repair takes several surgeries over months or years. The goal is to plan the surgical approach that will best meet your childs needs as they grow. […] After surgery, children with bladder exstrophy will require lifelong follow-up care. This helps ensure the best health and quality of life possible. […] Children with bladder exstrophy benefit greatly when they receive ongoing care from a variety of team members. […] The care team will provide a personalized care plan. They will monitor your child throughout childhood and adolescence. Your child will be scheduled for regular follow-up visits and testing to ensure their bladder and kidneys continue to develop in a healthy way.

• #1 Exstrophy Treatments

  https://www.urologists.org/article/treatments/exstrophy-treatments

  In general, surgery includes: Closure of the bladder and the pelvis […] Rebuilding of the urethra to increase its resistance to the flow of urine, which improves the capacity of the bladder […] Surgery on the neck of the bladder to improve its function […] Procedures to increase urine control and improve the appearance of the external genitals. […] Depending upon the extent of the defects, some of these stages may be combined. Also, when the bladder is too small to be closed properly, the flow of urine may be rerouted using a procedure called a urinary diversion. […] The outcome of surgery depends upon the quality of the bladder at birth, the initial closure of the bladder done on the newborn, the type of reconstruction used, and the experience of the surgeon. […] Surgery for cloacal exstrophy is more involved, but new techniques have improved the outcomes. Less than 25 percent of newborns who undergo staged reconstruction will have full control of their urine, due to problems with the nerves that control the function of the bladder. […] Other types of bladder reconstruction (using rectal reservoirs or augmenting the bladder with the intestines) have success rates of 90 to 95 percent.

• #1 Bladder exstrophy in children – Children’s Health Urology

  https://www.childrens.com/specialties-services/conditions/bladder-exstrophy

  Reconstruction done in stages, while a lengthy process, offers a hopeful prognosis for children with bladder exstrophy. About 75% of those treated for this condition will be able to exercise bladder control. The majority of those treated also have normal function of the bladder and sexual organs. […] After treatment, patients treated for bladder exstrophy generally have no lifestyle restrictions and the condition has no effect on life expectancy.

• #1 Bladder Exstrophy: Signs, Causes & Treatment | Baptist Health

  https://www.baptisthealth.com/care-services/conditions-treatments/bladder-exstrophy

  Modern staged repair of bladder exstrophy is another option doctors recommend. This type of surgery takes a staged approach and separates the reconstructive surgery into 3 different surgeries, sometimes over the course of 4-5 years. The 3 surgeries include: […] Children who do not receive treatment for bladder exstrophy are at greater risk of experiencing long-term complications, such as urinary incontinence, sexual dysfunction, and bladder cancer. Although recovery rates are highly successful after surgery, some children may walk with their legs turned slightly outward because of the separation of the pelvis. Additionally, although surgery is typically successful and corrects any urinary and sexual functioning, there is a higher risk for complications in pregnancy for both mother and child. Usually, there needs to be a planned cesarean section. Additional complications that may follow surgery include:

• #1 Bladder exstrophy – Wikipedia

  https://en.wikipedia.org/wiki/Bladder_exstrophy

  Bladder exstrophy is a congenital anomaly that exists along the spectrum of the exstrophy-epispadias complex, and most notably involves protrusion of the urinary bladder through a defect in the abdominal wall. […] The extreme rarity of the disease limits the surgical opportunities to practice the complex closure required in these patients. For this reason, patients have the best outcomes when the bladder closures are performed at high volume centers where surgical and nursing teams have extensive experience in caring for the disease. […] Upon delivery, the exposed bladder is irrigated and a non-adherent film is placed to prevent as much contact with the external environment as possible. […] Primary (immediate) closure is indicated only in those patients with a bladder of appropriate size, elasticity, and contractility as those patients are most likely to develop a bladder of adequate capacity after early surgical intervention.

• #1 Current management of classic bladder exstrophy in the modern era | African Journal of Urology | Full Text

  https://afju.springeropen.com/articles/10.1186/s12301-023-00356-4

  Surgical management of CBE requires multiple reconstructive surgeries starting with closure of the bony pelvis, bladder, and anterior abdominal wall, followed later by epispadias repair. […] Modern techniques in addition to recent discoveries in the diagnosis and delayed management of this disorder have enabled high rates of urinary continence, genital cosmesis, and an improved quality of life. […] While current techniques achieve reasonable success in preservation of renal function, continence, and cosmesis, there are still discoveries that are needed to improve quality of life even more. […] In the modern era, scheduled delayed closure for patients has become the new standard of care even for patients who could be candidates for neonatal closure. […] If bladder growth does not reach sufficient capacity, a bladder augmentation cystoplasty may be required.

• #2 Bladder Exstrophy | Boston Children’s Hospital

  https://www.childrenshospital.org/conditions/bladder-exstrophy

  Bladder exstrophy can result in challenges related to: […] Treatment for bladder exstrophy begins at birth. Your care team should be readily available to help you in the immediate post-natal period, but it is important to note that there are typically no emergency medical needs right after birth. The primary goal when caring for a child with bladder exstrophy is to: […] At Boston Childrens, two experienced surgeons work together for each major surgery related to exstrophy-epispadias complex. Surgical reconstruction is typically performed eight to 12 weeks after birth, at which time the bladder is closed, the bladder neck (area of transition from bladder to urethra) is reconstructed, and the epispadias is repaired (entire urethra is closed into a tube) at the same time. […] This surgical approach of closing the bladder, reconstructing the bladder neck, and repairing the epispadias at one time is referred to as complete primary repair of bladder exstrophy (CPRE).

• #2 Bladder Exstrophy | Texas Children’s

  https://www.texaschildrens.org/content/conditions/bladder-exstrophy

  Bladder exstrophy typically involves additional defects in the urinary tract, reproductive organs, pelvic bones, lower abdominal wall muscles and skin, and rectum. […] Babies with bladder exstrophy require surgery after birth to repair the defects. […] The type and timing of surgery varies based on the child’s defect and overall health. The timing may be immediate, with initial reconstructive surgery performed a few days after birth, or it may be best for the child to postpone or delay surgery for several weeks. […] Surgical strategies include a staged repair, where a series of three surgeries are performed over time, or a “complete primary repair” that combines the first two procedures in one surgery. […] The goals of surgery include: Closing the bladder and placing it back inside the body, Closing the urethra (epispadias repair), Achieving normal bladder function and urinary control, Preservation of renal (kidney) function, Closing the abdominal wall muscles and skin, Repairing the function and appearance of genitalia, for normal sexual and reproductive function, Attaching the pelvic bones (osteotomy).

• #2 Bladder Exstrophy | Treatment & Management | Point of Care

  https://www.statpearls.com/point-of-care/121871

  Two reconstructive approaches, the modern staged repair of exstrophy (MSRE) and the complete primary repair of exstrophy (CPRE), are commonly adopted by surgeons across the world. The aims of the surgical treatment are to provide a competent receptacle (bladder) for storage, to prevent upper tract damage, and to provide cosmetically acceptable genitalia providing good functional outcomes in terms of continence and sexual function. […] Surgical treatment of classical bladder exstrophy not only involves the bladder closure, but it also includes procedures such as epispadias repair, bladder neck reconstruction, bladder augmentation, and ureteric reimplantation. Additionally, the abnormalities in the bony pelvis and the pelvic floor need to be addressed along with exstrophy repair. Various procedures have been described for bladder exstrophy. They fall into two main categories: the reconstructive procedures and the diversion procedures. The modern approaches focus mainly on the reconstructive procedure; however, the Mainz group in Germany has favored the diversion procedures and has highlighted different aspects from time to time. The major goals of exstrophy repair include the closure of the bladder and creating a receptacle for storage that grows with the child, preservation of the upper tract function, and reconstruction of the genitalia providing good functional outcomes in terms of continence and sexual function.

• #2 Bladder Exstrophy: Signs, Causes & Treatment | Baptist Health

  https://www.baptisthealth.com/care-services/conditions-treatments/bladder-exstrophy

  There are two different surgery options for bladder exstrophy. The first option is known as a complete primary repair of exstrophy (CPRE). This option allows doctors to repair everything in one surgery. The second option uses a staged approach. This allows doctors to perform different reconstructive surgeries over time, or in different stages. This option is known as modern staged repair of bladder exstrophy (MSRE). These surgeries can be performed from shortly after birth to the age of 4-5 years. Your doctor will consult with you to determine the best option for surgery. This is usually determined by the severity of the condition. […] Complete primary repair of exstrophy (CPRE) can be done between 72 hours after birth but is most commonly performed at 6-12 weeks after birth. This reconstructive surgery seeks to correct congenital abnormalities that disrupt or inhibit bladder and sexual functioning. The main goals of the surgery include:

• #2 Bladder Exstrophy – Seattle Children’s

  https://www.seattlechildrens.org/conditions/bladder-exstrophy/

  With surgery and other treatment, children with exstrophy can lead normal, healthy, active lives. […] Each child with bladder exstrophy is different. Your child’s care and treatment will depend on their needs. You and your child’s urologist will develop a plan of care just for your child. […] After doctors make the diagnosis, your child may have surgery to: […] For young babies, we do all these steps in a single surgery (complete primary repair), 3 to 4 months after birth. […] 1-stage repair means your child will have better outcomes. The bladder is more likely to grow to normal or nearly normal size, giving your child more control over urine flow. […] Your baby will be in the hospital for 7 to 10 days when they have surgery. […] Before your baby leaves the hospital, your child’s nurse will teach you how to care for your baby at home.

• #2 Bladder Exstrophy: Causes, Symptoms & Treatment

  https://my.clevelandclinic.org/health/diseases/21806-bladder-exstrophy

  Babies who have bladder exstrophy at birth need surgery. […] Sometimes, babies have one surgery to close the abdomen and repair the urethra. This happens in the first few months of life. […] Other times, they may have a three-step surgery process: Immediately after birth to close the pelvis (osteotomy) and bladder (bladder salvage). […] Around 6 months of age to rebuild the sex organs and urethra (epispadias repair). […] Around 4 to 5 years of age (or around potty-training age) to fix the bladder so it can hold pee (augmentation cystoplasty) until its time to use the bathroom. […] Surgery is the only way to treat bladder exstrophy. The type and number of surgeries your baby needs will depend on the severity of their symptoms. Your babys surgeon will explain the best approach for your babys needs. As your child grows, they may need additional surgeries so they can hold their pee until its time to use the bathroom. […] Most babies have good long-term outcomes if they have surgery to treat bladder exstrophy. Most children who receive treatment can run, play or do any other typical activities without problems.

• #2 Bladder Exstrophy – MD Searchlight

  https://mdsearchlight.com/child-health/bladder-exstrophy/?utm_source=pubmedlink&utm_campaign=MDS&utm_content=121871

  Talking about the procedures, two are mostly performed: the Modern Staged Repair of Exstrophy (MSRE) and the Complete Primary Repair of Exstrophy (CPRE). […] In MSRE, surgery is divided into stages or separate steps, which are usually performed at appropriate times. […] The first step involves turning in or folding the bladder inward, typically during the first few days after birth. […] The second step is reconstructing the genitalia, performed when the baby is around 6 to 9 months old. […] The third step is reconstructing the bladder neck, generally done when the child is between 4 to 5 years old when they are old enough to be involved in toilet training. […] CPRE, on the other hand, involves doing all the steps in one go. […] The idea is to start bladder cycling early to ensure optimal bladder development and also to avoid subsequent surgeries.

• #2 Bladder Exstrophy Program | Nationwide Children’s Hospital

  https://www.nationwidechildrens.org/specialties/urology/bladder-exstrophy-program

  Nationwide Children’s is the only hospital in the United States to offer the Kelly procedure, which is a soft tissue reconstruction approach to treating bladder exstrophy. Hospital stays following the Kelly procedure are usually around 8-10 days after surgery. Regardless of the approach that would be best for your child, our goal is to make children with bladder exstrophy continent (able to stay dry) by the time they go to school. […] The Kelly procedure is also called radical soft tissue mobilization (RSTM). This technique involves rebuilding the soft tissue of the bladder neck. It uses the child’s own existing muscle and soft tissue to create the new neck of the bladder. This ring of muscle then works like a sphincter to open and close bladder. This helps to control the flow of urine. This helps to hold urine in the bladder and form a strong urine stream. The Kelly procedure creates a sphincter because a natural one did not form. Your child will stay at Nationwide Children’s for about eight days. After the procedure, continence develops over the next few years. The end goal is to have the child completely dry by the time they enter kindergarten. […] When it comes to treating bladder exstrophy and epispadias in children, Nationwide Children’s is the only hospital in the United States that is able to offer the Kelly procedure.

• #2 4 Things to Know About Bladder Exstrophy at Nationwide Children’s Hospital – Pediatrics Nationwide

  https://pediatricsnationwide.org/2024/11/01/4-things-to-know-about-bladder-exstrophy-at-nationwide-childrens-hospital/

  “Our team follows a strategic, two-phased approach to bladder exstrophy repair. The first step is surgical closure, which puts the exposed bladder back inside the abdomen,” explains Dr. Jayanthi. […] “With all girls and many of the boys, we hope the Kelly operation will be the last big surgery,” says Dr. Cuckow. “In my experience, it’s true for most – about 75%.” […] “Our team will be here to support patients and their families every step of the way,” says Dr. Jayanthi. “As the child grows and matures, needs change. We’re here for all of it.”

• #2 Bladder exstrophy repair: MedlinePlus Medical EncyclopediaLock

  https://medlineplus.gov/ency/article/002997.htm

  After pelvic bone surgery, your child will need to be in a lower body cast or sling for 4 to 6 weeks. This helps the bones heal. […] Urinary control most often happens after the neck of the bladder is repaired. This surgery is not always successful. The child may need to repeat the surgery later on.

• #2 Bladder exstrophy: An overview of the surgical management

  https://pmc.ncbi.nlm.nih.gov/articles/PMC3160059/

  This procedure is undertaken at least 1 year after primary closure of the bladder exstrophy. […] The aim of this operation is to tubularize the posterior urethra from the region of the bladder neck up to the external meatus. […] The assessment of continence was graded into four groups. […] The ultimate goal of treatment is to put all patients in group I with or without bladder neck division, bladder augmentation and appendico-vesicostomy. […] Bladder augmentation is the final option in the surgical management of bladder exstrophy for a variety of reasons. […] The most important contribution of bladder augmentation, apart from the increase in bladder capacity, is the increase in dry periods, relief of intravesical pressure which then protects the upper tracts from pressure-related damage and the maintenance of separate fecal and urinary streams. […] Thus, the strategy in the management of bladder exstrophy is to convert the exstrophied bladder patch into a continent reservoir which can be periodically emptied either spontaneously or with assistance and at the same time to preserve the upper tracts.

• #2 Bladder Exstrophy | Nationwide Children’s Hospital

  https://www.nationwidechildrens.org/conditions/bladder-exstrophy

  If a child has a small, unhealthy bladder that does not grow as the child gets older, a bladder augmentation may be needed. In this procedure, a piece of intestine is used to increase the size of the bladder. With the Kelly approach, the number of children requiring an augmentation is much less than with other techniques of exstrophy management. […] Children born with bladder exstrophy will need surgeries to repair the birth defect. These surgeries will help: Gain bladder control (become toilet trained), Preserve kidney function, Repair genital appearance, Help gain sexual function. […] For many children (about 75%), the Kelly procedure is considered the most major operation to treat the condition. Additional treatments may include procedures to repair the appearance of the external genitalia, abdominal wall and control of their urine in the daytime. Nighttime continence may take longer to develop. In some of the boys, the end of the penis will need some further surgery to bring the urethra to its tip.

• #2 Bladder exstrophy and epispadias | Great Ormond Street Hospital

  https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/bladder-exstrophy-and-epispadias/

  All surgery carries a small risk of bleeding during or after the operation. Every anaesthetic carries a risk of complications, but this is small. There is a small risk of infection, but the child may be given antibiotics as a precaution. […] The outlook for babies born with bladder exstrophy is good, although around 20 per cent of all children born with bladder exstrophy need some further treatment later in childhood if they are having problems keeping dry. Following the Kelly procedure, if the ring of muscle around the base of the bladder is too weak, urine could dribble out all the time. […] This can be improved with an operation called bladder augmentation, which involves making the bladder larger, and therefore able to hold a larger volume of urine, using a section of intestine. These children then empty their bladder using a catheter to drain away the urine. The catheter can be inserted either into the urethra or a specially made channel called a Mitrofanoff.

• #2 Bladder Exstrophy – Center for Young Women’s Health

  https://youngwomenshealth.org/guides/bladder-exstrophy/

  Many people with bladder exstrophy need to take medicine to help the bladder work correctly. A person may also need medicine to treat or prevent bladder and kidney infections. […] Two main types of medications used for teens and young adults with bladder exstrophy are: anticholinergics, which relax the bladder, help the bladder hold urine longer, and take pressure off of the kidneys, and antibiotics, which treat and prevent infections of the urinary system. […] Many patients with bladder exstrophy have trouble emptying their bladders completely and require help using catheterization. […] It is important to stay on the schedule that your health care provider gives you, even if your bladder doesn’t feel full. […] Following your treatment plan will lessen your chances of getting urinary infections and keep your kidneys working well.

• #2 Bladder Exstrophy | Children’s Hospital of Philadelphia

  https://www.chop.edu/conditions-diseases/bladder-exstrophy

  We prefer this approach because we believe that having the complete primary repair as soon as possible after birth allows for more normal bladder function to begin earlier, and gives your child the best chance for long-term continence that will last through adulthood. […] Our long-term goals for children with exstrophy are to optimize daytime and nighttime urinary control, to preserve normal kidney function, and to optimize the appearance and function of the external genitalia. Your child may need additional surgery as she grows older to improve continence or to complete the genital reconstruction. […] After surgical repair of bladder exstrophy, your child will require lifelong follow-up care. After the initial surgery, our team will follow your family closely. Your child will be scheduled for regular follow-up visits and ultrasounds to ensure her bladder and kidneys continue to develop in a healthy and safe way. […] Our team has years of experience working together to ensure the best surgical and social outcomes for children with bladder exstrophy. We believe our expert team approach and high volume surgical experience will improve the future for families and children with bladder exstrophy and epispadias.

• #2 Bladder Exstrophy | Diagnosis, Treatment & Outlook

  https://www.cincinnatichildrens.org/health/b/bladder-exstrophy

  It is very common for children with bladder exstrophy to experience emotional issues related to their condition. Parents may struggle with complicated feelings about having a child with this condition. A psychologist can be part of the care team to help your family understand these feelings and deal with them together. […] With surgery and other treatment, children with bladder and cloacal exstrophy can have a happy, productive life with normal life expectancy. Some males with bladder exstrophy grow up to experience fertility issues, but fertility assistance is available to help them conceive a child.

• #2 Bladder Exstrophy | Nationwide Children’s Hospital

  https://www.nationwidechildrens.org/conditions/bladder-exstrophy

  Ongoing care will help to make sure your child’s bladder, kidneys and genitals develop and remain functioning in a healthy way. Many people regain continence after surgery and maintain it throughout their lifetime. […] When it comes to treating bladder exstrophy and epispadias in children, Nationwide Children’s is the only hospital in the United States that is able to offer the Kelly procedure. […] The Kelly procedure differs from the traditional surgical treatment for bladder exstrophy that involves a pelvic osteotomy. With an osteotomy, the child stays in the hospital, in traction, for up to 2 months. With the Kelly procedure, the child will stay at Nationwide Children’s for about 8 days. After the procedure, continence develops over the next few years. The end goal is to have the child completely dry by the time they enter kindergarten.

• #2 Bladder exstrophy in children – Children’s Health Urology

  https://www.childrens.com/specialties-services/conditions/bladder-exstrophy

  Reconstruction done in stages, while a lengthy process, offers a hopeful prognosis for children with bladder exstrophy. About 75% of those treated for this condition will be able to exercise bladder control. The majority of those treated also have normal function of the bladder and sexual organs. […] After treatment, patients treated for bladder exstrophy generally have no lifestyle restrictions and the condition has no effect on life expectancy.

• #2 Bladder Exstrophy | Children’s Wisconsin

  https://childrenswi.org/medical-care/urology/conditions/exstrophy-of-the-bladder

  Children’s Wisconsin is a Center of Excellence and member of MIBEC (Multi Institutional Bladder Exstrophy Consortium) for bladder Exstrophy and Epispadias. Our goal is to help your child have good bladder health, bladder control, and lead a normal active life. […] Children’s has been designated a „Center of Excellence” in the treatment of bladder and cloacal exstrophy by the Association for the Bladder Exstrophy Community (A-BE-C). A-BE-C’s Centers of Excellence program is the first to recognize health systems that are meeting the highest standards of treatment for the rare conditions of bladder and cloacal exstrophy, including post-operative and long-term care. […] Your child will be treated by our specialty team consisting of urologists, orthopedic surgeons, anesthesiologists, nurse practitioners, and nurses who have experience with all areas of bladder exstrophy. Typical care begins with a visit to our Urology Program.

• #2 Bladder Exstrophy Program | Children’s Hospital of Philadelphia

  https://www.chop.edu/centers-programs/bladder-exstrophy-program

  We provide a detailed diagnosis and comprehensive surgical planning, before a child is even born. Our reconstructive approach and extensive physical therapy program have resulted in outcomes that are among the best in the world. […] Here at the Bladder Exstrophy Program, your child’s care is in the hands of a team of pediatric urologists with special expertise. We work together to improve your child’s health and quality of life.

• #2 Bladder Exstrophy | Pediatric Urologists | Duke Health

  https://www.dukehealth.org/pediatric-treatments/pediatric-urology/bladder-exstrophy

  Duke Childrens is one of a handful of U.S. centers with an expert team specially trained to care for children with bladder exstrophy. We manage care across the lifespan, from prenatal planning to birth and throughout childhood, adolescence, and into young adulthood. […] Treating bladder exstrophy involves a series of surgeries to repair the bladder, reshape the pelvic bones, and ensure affected organs and systems — such as the kidneys and urinary control — are functioning correctly. […] Our team of pediatric urologists, orthopedists, nephrologists, and physical therapists work together to help your child develop properly. Our goal is to ensure your child achieves adequate urinary continence so they may lead a normal, healthy, and happy life. […] Bladder exstrophy treatment is an extended process that is challenging for families. It requires numerous surgeries and weeks of recovery in the hospital, compounded by the worry and stress you might feel caring for a child with complex health needs.

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