Since in Holland I’ve caught my breath, accepted the shock and adjusted to something different than I'd planned. Years ago my plane took an in-flight detour, and landed in Holland. I remember those feelings; the fear, the anger - the pain and uncertainty. At first, I tried to get to Italy, but all planes were booked, and Holland is where I stayed. Today, I have learned much more through a journey of patience and time. I bought new guidebooks, learned a new language and labored hard, sometimes both night and day, but I found my way. I made connections with others who also had plans change and who understood. They taught me to open my eyes to the gifts of Holland. Now I am a veteran guide to wayward travelers coming to Holland. This journey has been challenging and I remember my tantrums; kicking, screaming and crying in frustration (sometimes I still do).However, Holland has been an unexpected gift. I have learned to look at things with a new awareness. My child and I, walking hand in hand, experienced together the magnificence of Holland tulips, windmills and Rembrandt’s. We love Holland and call it home. We have discovered that it doesn't matter where you land. It is what you make of your journey.
Wednesday, April 20, 2011
Welcome to Holland and Since I Caught My Breath
Many of you are familiar with the poem by Emily Perl Kingsley, "Welcome to Holland". I wanted to share with you a poem I wrote as a continuation to that poem. It is entitled, "Since I Caught My Breath."
Sunday, March 20, 2011
The Early Days with my Newborn Daughter
Depending on the extent of your baby’s first surgery it will be one or two days until your baby can take fluids by mouth. When that time comes nurses and/or lactation consultants, specially trained nurses who can help with breast feeding your baby, can help the mother to breastfeed or express milk to be fed through a bottle if you are unable to hold your baby due to hip immobilization devices. I have found that nurses also serve to push and encourage mothers to get plenty of rest and good nutrition. Take it from me, this is difficult in a hospital setting and dealing with the stress of the surgery and the condition of your newborn. Often times you lose track of time, you don’t feel like eating and let’s face it you really don’t want to leave your baby. I used to get scolded from the nurses for not staying on schedule with pumping breast milk. I wanted to spend as much time as possible with my daughter. I didn’t know exactly what I was going to miss by leaving to go to the special little room to pump, but whatever it was I was not going to miss it.
My daughter’s primary NICU nurse was great. Oh she was no nonsense and if you wanted to hear the sugar coated version of things she was NOT the one to go too, but she was great. She looked after my daughter like she was her own. She knew all her stats all the time. She knew when something didn’t add up, she also knew when my daughter just wasn’t right even though all the machines and monitors indicated there was nothing wrong. In addition to all of that she watched the family. She knew who was there, for how long, what they brought and what they did. She also knew that I was there all day and into the night every day and with little or no breaks. She was the one who basically got after me to take care of myself. She would come by at regular intervals and ask things like: when did you pump last, did you eat, what’s the weather like outside, etc. All things that were essentially saying, “Get up and outta here for a little bit for your own health and well being.” She wasn’t afraid either to say, “Get up and go somewhere, anywhere,” if she saw that her “subtle” hints were hitting against a brick wall.
After surgery your baby will have pain and discomfort. Pain medication will be given to your baby as needed. There are many different ways that you can assess the pain level in your baby and help to comfort your baby. If your baby is in pain your baby may not be sleeping well, may cry inconsolably, seem agitated, or their heart rate and breathing may be fast. In my daughter’s case, her signs were that her heart rate would be fast and she would hold her breath, so her oxygen levels were always dropping.
Some things that may comfort your baby are a quiet environment with dim lights, your soft touch and the sound of your voice, music, and swaddling the areas of the body that can be. The nurses also told me that research has shown that sucking on a pacifier also soothes an irritable baby. At first, my daughter had problems with her suck reflex so, at first, the pacifier did little. However, for feeding purposes, a therapist came in and stimulated her suck reflex and then my daughter took to a pacifier so well that it took four years to get her to let go of it. I think every picture we have of her for the first four years of her life she has a pacifier in her mouth, no matter what she was doing.
Since parent-child bonding is essential to the healthy development of the newborn, many hospitals offer “rooming in” or a sleeping sofa for parents. These allow parents to remain close to their baby and be involved in all aspects of care. Parents begin to learn the baby’s routine and to appreciate his or her unique personality. The touch and voices of a mother and father comfort and provide security for the newborn. Since my daughter was in the NICU for the whole duration of her first stay in the hospital we did not have this.
Prior to going home parents are taught the special care their baby requires. If tubes are left in, parents will be taught how to care for the tubes and the skin. Also, if the baby goes home in a cast, parents will be taught how to properly care for the cast and the skin below.
Parents may have many concerns regarding bringing home their new baby from the hospital after a major surgery. In fact, when my daughter’s surgeon announced that he thought my daughter could go home straight from the NICU, I was petrified. My daughter’s care team had been discussing moving her from the NICU to the regular “baby floor” but there were problems with space. Then, all of the sudden, the surgeon suggests we take her home. I remember having a long conversation with him on the phone. I expressed my concerns and brought up the fact that she has never even been out of the NICU and now I was supposed to take her home and care for her. He addressed those concerns pretty good, but of course I was unsure. I remember asking him about her exposure to additional germs at home (out of what I thought at the time was a very safe virtually germ free environment of the NICU). He told me in no uncertain terms, “With the germs that are floating around the NICU, you could take your daughter home, place her on a dirty kitchen floor and she would be exposed to fewer germs.”
Before going home I had “educational sessions” with pediatric nurses and some of the surgeons themselves. I meet with social services so they could give me information about support services in our area, set up medical supply companies, in home nursing, etc. The nurses in the NICU encouraged frequent phone contact and provided round the clock resources and medical advice any time of the day or night.
You may find it beneficial to talk with other parents of children born with bladder exstrophy. Depending on your family’s location, these arrangements may be made by the hospital before the baby is discharged from the hospital. Unfortunately, this is one of the areas I don’t think the hospital addressed very well with us. We got a few brochures and phone numbers on support groups but they were for parents of children with varied special needs, but nothing specifically for our daughter’s condition.
It wasn’t until my daughter was three years old that I found out about The ABC, and I got that information in a roundabout way. It was during the hospitalization when my daughter had her “big surgery”, at that time she had double osteotomies, bladder augmentation, a pull through and an anal and vaginal opening created. It was during one the morning rounds when the surgeons and residents came around. At the end of the visit one of the residents hung back and said, “There is another little girl on the other side of the floor who had a similar surgery. Would you like to meet the family?” Of course I said yes and in a couple of days we were hooked up. It was talking with this mother that I found out about The ABC.
Once we were home for the first time with our daughter I found that, even with education and preparation, I was afraid to care for my daughter who had been receiving intense medical and nursing. Learning to understand my daughter’s behaviors and routine were compounded by worrying about my daughter’s urine output, fluid intake, medication regimen and watching for post-operative complications. In addition, she was sent home with a central line and the fright that came along with that was overwhelming at times.
Day by day I learned about my daughter’s specific behaviors, what to watch for and which bodily functions need to be observed, what was normal and what wasn’t and soon it all became second nature.
Thursday, March 17, 2011
Benefit to Raise Money for Financial Hardship
As you know or may be seeing there are extensive hospitalizations, surgeries, medical supplies and therapies that come with exstrophy. Of course there are different degrees of exstrophy and, therefore, different degrees of financial investment that comes along with it. We have been EXTREMELY lucky in that my health insurance has covered the majority of our medical expenses related to my daughter's condition. There have been some times when insurance was sparse and quibbled about what they would cover, but we have been luckier than some in that, while my daughter's condition did cause financial stress, we have never been in a situation where we experienced true hardship. Here is a story of one benefit held for a little girl born with cloacal exstrophy. Her condition has caused the family to enter financial hardship.
http://brick.patch.com/articles/pba-basketball-game-to-benefit-brick-girl-with-rare-condition
http://brick.patch.com/articles/pba-basketball-game-to-benefit-brick-girl-with-rare-condition
Wednesday, March 9, 2011
A Really Nice News Story
It's been a little bit since I posted anything but there IS more to come. I ask that you just hang in there with me. I do have a link to a nice story about a girl born with bladder exstrophy. Check out this link to the story if you haven't seen it already.
http://www.abc15.com/dpp/news/region_west_valley/glendale/valley-teen-with-rare-disorder-treated-to-spring-training-game
http://www.abc15.com/dpp/news/region_west_valley/glendale/valley-teen-with-rare-disorder-treated-to-spring-training-game
Tuesday, February 1, 2011
Latex Allergy and Bladder Exstrophy
While we are talking about the other conditions related to exstrophy I figured this would be a good time to bring up Latex allergies. Latex is the sap of the Heva Brasiliensis tree. It has been used in the manufacture of medical equipment since 1888. William Stewart Halsted, The Johns Hopkins Hospital's first surgeon in chief, is widely credited as the first to develop and introduce rubber surgical gloves in the United States, in 1894. (http://www.latexallergyresources.org/Pressroom/pressRelease.cfm?PressID=65).
Latex (natural rubber) allergy began to appear in the bladder ecstrophy and spina bifida population in the late 1980’s. Allergic reactions can range from watery and itchy eyes and/or sneezing and coughing, to hives (a blotchy, raised, itchy rash) to swelling of the trachea (wind-pipe) and even to life-threatening changes in blood pressure and circulation (anaphylactic shock). Because of the potential for serious reactions many hospitals are carefully assessing and adjusting their use of supplies containing latex. The Johns Hopkins Hospital has become the first major medical institution to become "latex safe" by ending all use of latex gloves and almost all medical latex products. (http://www.latexallergyresources.org/Pressroom/pressRelease.cfm?PressID=65).
It is theorized that sensitivities to Latex may develop in exstrophy patients as a result of the early, intense and constant exposure to rubber products through multiple surgeries, diagnostic tests and examinations, and from ongoing bladder and bowel programs. Exposure to latex occurs when products containing rubber come in contact with a person’s skin, mouth, eyes, genitals, bladder, or rectum. Serious reactions can also occur when latex enters the bloodstream. This is why you may have heard of severe allergic reactions occurring following injection of medication through latex stoppers or IV ports.
Other sources of contamination from latex are the powders from balloons or gloves that absorb latex proteins and become airborne. Food that has been handled by latex gloves may also cause a reaction. Also, people who have allergic reactions to latex may also be allergic to certain foods, including bananas, chestnuts, avocados and kiwi fruit. We’ve never had a problem here as my daughter would rather go hungry than try to eat any of these foods.
All individuals with bladder exstrophy are at high risk for having an allergic reaction to rubber and should avoid contact with rubber products. Only nonlatex gloves and catheters should be used. Alternative products, usually made of silicone, plastic or vinyl, can usually be safely substituted.
At first I was very diligent about my daughter’s exposure to latex. As a new mother and, more specifically, a new mother with a baby with special needs, I stressed over everything that may have had Latex in it. I wanted to know, how long she was touching it, if she had the item near her face or in her mouth, etc. When she was small I had better control of “all” of her environments.
Over time, as she was exposed to Latex and has not experienced an adverse reaction, I learned to step back a bit and CHILL. Today, I do limit her exposure to latex and in all medical procedures and surgeries she is identified as following “Latex Precautions”. Notice I said I limit her exposure. She still comes into contact with it here and there, I still check for reactions, but I don’t freak out anymore. As I’ve said, we’ve been lucky in that she has not experienced a reaction but all cases are different.
Children who have experienced definite allergic reactions should wear a medic-alert bracelet or necklace. They should also carry an auto-injectable epinephrine, and carry non-latex supplies for emergency use ( sterile gloves, catheters). Your child’s latex allergy should be discussed with all individuals that come into contact with your child, including school, day care, and camp, babysitters, relatives and medical personnel.
The following commonly encountered items may contain latex and pose a risk to the latex sensitive individual:
Healthcare Items:
Gloves, catheters, tourniquets, elastic bandages, ace wraps, IV tubing injection ports, medication vials, tape and dressings, Band-Aids.
Home / community items:
Balloons, pacifiers, dental dams, rubber bands, elastic in clothing, beach toys, koosh balls, baby bottle nipples, condoms, diaphragms, diapers and art supplies.
This is only a partial list, and it is always a good idea that individuals with bladder exstrophy and their families ask about the composition of products used in their care and in their home. More information about Latex, how it relates to exstrophy patients, and the list of items that contain Latex can be found by going to the following links:
When those Silly Bandz became all the craze my kids poured over all the shapes, colors, figures, etc. I wondered if these accessories contained latex. Supposedly, the true Silly Bandz brand does not contain latex. However, there have been instances where kids who were allergic to Latex did have reactions to them. My daughter goes back and forth on these accessories. Sometimes she wears them, but actually she seems to prefer those “cause” silicone bracelets. Below are some links containing information on the Silly Bandz and how they relate to Latex allergy reactions:
Thursday, January 27, 2011
Bladder vs. Cloacal Exstrophy
Bladder Exstrophy
Exstrophy of the bladder is an abnormality of the bladder and urethra, where the bladder is turned "inside out", not formed completely, and is open to the surface. The urethra and genitalia are not formed completely (epispadius), and the anus and vagina may not be placed in their usual places. Additionally, the pelvic bones are widely separated (diastasis) and the baby has a low set umbilicus.
Exstrophy includes a spectrum of urologic abnormalities that range from mild to severe. Epispadias, the milder form, is a condition where the urethra (the tube that carries urine out of the body from the bladder) opens on the top surface of the penis instead of on the tip. In classic bladder exstrophy, the bladder and related structures are open and located outside the body. The pubic bones, which are normally joined to form in the front of the pelvis, are separated. Cloacal exstrophy, the most complex and severe form of bladder exstrophy, also involves the bowel. (health – cares.net)
Q: What causes exstrophy?
A: Obviously, exstrophy is the result of a problem that occurred during the development of the embryo. What exactly that problem was is unclear. One theory says that something went wrong with the separating, dividing and folding of the cells during the development of the embryo. A second theory says that the muscle and connective tissue over the bladder did not form correctly and the thin layer of skin is not able to hold the bladder and pulls apart.
In the first days, after my daughter’s birth it was suggested that perhaps her exstrophy was a result of a twining process that went wrong. During the first trimester of my pregnancy, I experienced spotting. It went on for about four to five weeks. I continually went to my obstetrician and was monitored closely. At first, my obstetrician thought that I was miscarrying and put me on bed rest. The bed rest helped, but it did not go away entirely. My obstetrician could not find any reason for the spotting. Once it was apparent that I was not miscarrying, my obstetrician wrote the spotting off as, “some women just spot during their pregnancy.” Since that episode occurred around the time that the midsection (the areas that exstrophy affects) was forming, and since there was a history of twins in my family some medical personnel theorized that I had actually become pregnant with twins. Around the time I was spotting, it was theorized that I lost one twin. Instead of my body actually “getting rid” of the twin, my daughter’s developing body absorbed the twin into her own. Because of this “disruption” during this particular time in my pregnancy medical personnel felt that the folding, dividing and separation process of cells was interrupted and altered.
This, of course, is just a theory; no one could say for sure what happened in my case or in any exstrophy birth. One thing is clear, exstrophy is not caused by anything the mother did or did not do during pregnancy. The feeling of guilt is common in every mother. I went over and over what I ate, what I drank, what I did. Remember that poor genetics Dr? It took a while for me to accept that my daughter’s exstrophy was not a result of anything I did. With time knowing this did help to put my mind a little more at ease.
Q: What orthopedic aspects are associated with exstrophy?
A: Each area of the body develops together during a certain time before birth. This includes organs, boney structures, etc. Development of one structure affects another. Since the wall of the bladder and abdomen are opened, so are the bones of the pelvis.
The normal pelvis develops as a ring. It is closed in the front and back and protects the lower portions of the intestinal, urinary and reproductive systems. It also contains the muscles of the pelvic floor, which help to stop urination and provides continence. It is composed of three bones, which begin as flexible cartilage in the embryo, and gradually develops into calcified bone as the baby grows. That is why the surgeons wanted to wrap my daughter’s pelvis and legs. They wanted to take advantage of this window of time and hopefully bring together the pelvic bones before calcification The two pubic bones that join in front are joined with a connective tissue to protect the bladder.
This is one of the affected parts in the anatomy in a child with exstrophy. Since the bladder and the muscles of the abdominal wall are open in front, the pelvis is also open in front. Therefore, this whole area needs to be closed either at the same time or in staged reconstructions.
Cloacal Exstrophy
Babies born with cloacal exstrophy have a larger opening in their abdominal wall and bladder, and the lower intestines are exposed. In addition, they may have abnormalities in the back. They may also have weakness in the feet and legs. The pelvises in these babies are more widely open and sometimes unstable. The hips may also be dislocated. Luckily, my daughter did not have any of the abnormalities in the back, feet or legs.
Q: What surgical procedures are associated with Cloacal Exstrophy?
A: Cloacal exstrophy is on the most severe side of the exstrophy spectrum. It includes abnormalities in the bladder, urethra, and genitalia, large intestine, spine, and lower extremities. Babies also present with an “exstrophy hernia” which is a defect in the abdominal wall above the bladder. This is called an omphalocele.
In general, during the first procedure, soon after birth, the omphalocele is closed, the intestine (the hindgut or large bowel) is removed from the two bladder halves, a colostomy is made, and the two bladder halves are sewn together. Every effort is made to save the entire large bowel (hindgut) because this tissue is very important in fluid and electrolyte conservation. This large bowel segment is added onto the end of the small bowel; it usually is not left with the bladder. Sometimes, it is also possible to close the bladder and omphalocele in the first procedure. This depends on the size of the omphalocele.
With my daughter they were able to close the omphalocele, close the bladder, create a colostomy, but not totally remove the large bowel from the bladder. It was still connected through a fistula. In time, their goal was to separate this completely, but they wanted to allow time for her internal organs, as well as, her body in general to grow.
After this operation, my daughter was back in the NICU and on a respirator. She was sedated pretty heavily the first few days as they were trying to limit her movement and allow her body to heal. It was probably a good thing because once she was weaned from sedation she was her feisty self, pulling at any tubes she could get her hands on and trying to squirm out of the traction they placed her in.
This movement was the cause of one of her complications of the surgery. She was so active and constantly rubbing her legs together and trying to pull them out of traction that she developed pressure sores around her knees. They were deep sores where the skin broke down.
The nurses and surgeons tried several things to try and “wait out” her traction period. These things included putting padding between her knees, trying different ointments, cleaning and wrapping her sores. None of this helped and they ended up taking her down out of traction a week early.
It took weeks to heal those sores. They pussed, drained and were very ugly, angry looking sores. We needed to clean them twice a day and I remember my daughter just wailing. That kind of cry that babies cry where they can’t even take a breath. I imagined it hurt her very much by the way they looked and it made my heart hurt.
Even after we came home we continued cleaning and changing the dressings on her sores. They eventually healed but even now, over a decade later, she still has scars around her knees. My daughter always mentions, “Many people don’t know about my exstrophy, but everyone thinks I’ve had surgery on my knees.”
Q: What additional challenges are associated with Cloacal Exstrophy
A: Besides the obvious urinary and genital problems of cloacal exstrophy, there may be skeletal and gastrointestinal abnormalities, as well. The skeletal problems include vertebral, tethered spinal cord, a myelocystocele (a lesion similar with those seen in spina bifida), and limb abnormalities (which may affect overall growth and/or sensation in some limbs). The gastrointestinal problems include: inguinal hernia, ostomy care, and the possibility of short-gut syndrome which affects nutrition.
For more information go to:
Bladder Exstrophy Links
Cloacal Exstrophy Links:
Tuesday, January 25, 2011
Glossary of Terms
At this time I think it would be beneficial to share a glossary of common terms used in relation to exstrophy. I will list the terms and meanings here for ease of cross-referencing. This glossary can also be found at The Association for the Bladder Exstrophy Community - THE ABC. The ABC is an international support group for individuals who were born with a form exstrophy and their families. They can be found at http://www.bladderexstrophy.com/.
Anomalies Another name for birth defect. More properly, it is termed congenital anomaly in the case of our exstrophy patients, which implies a developmental defect that happened during fetal life.
Anterior
Anatomically located in front of another body part; for example, the anterior surface of the bladder is the front wall of the bladder.
Appliance An adhesive bag worn to collect waste
Augmentation To enhance. In terms of exstrophy patients, augmentation typically means to enhance the size of the bladder with a piece of intestine-typically, the small intestine, large intestine(colon) or in very rare cases, the stomach.
Bifid Forked or split into two parts (such as the ureter or the penis).
Bilateral Occurring in or affecting both sides of the body(ie. both the left and right kidney) .
Bladder augmentation Surgical procedure to enlarge the capacity of urine the bladder can hold. It lowers the pressure in the bladder. Most commonly, a piece of intestine (bowel) is moved, cut open, and added to the opened bladder to make a larger urine container.
Bladder closure The surgical procedure to create a hollow sphere of the exstrophy bladder plate and to place it within the abdomen. It may be the first attempt (primary bladder closure) or the second or subsequent attempt (redo bladder closure).
Bladder neck plasty Another name for bladder neck reconstruction, the muscle floor of the bladder is rolled into a tight tube to create a sphincter-like affect to help increase the strength of the bladder neck area to render the child continent of urine.
Bladder neck suspension The surgical procedure in which stitches are used to permanently sew the bladder neck to the back of the bony pelvis. This helps achieve urinary continence.
Bryant's traction A type of immobilization of the pelvis using pulleys and weights. This is used on patients with classic bladder exstrophy closures who were closed within 48-72 hours of life and without osteotomies.
Calyces The smallest part of the collecting system of the kidneys. The urine is filtered in the cortex or "meat" of the kidney and filters through tiny ducts in the calyces where it begins to be collected and passes down into the pelvis of the kidney before it passes down the ureter to the bladder.
Catheter A hollow, flexible tube inserted into a body cavity, duct, or vessel to allow the passage of fluids.
Catheterization The passage of a tube, either through the urethra into the bladder, or through a stoma in the abdominal wall into the bladder.
Caudal Anatomically more toward the tail than another part of the body.
Cephalad Anatomically more toward the head than another body part.
Chordee A bend in the penis. In the exstrophy/epispadias group, chordee is typically upward in the direction of the abdominal wall. This is part of the total birth defect in this complex. This bend is fixed at the time of epispadias repair.
Classic exstrophy The most common birth defect seen in the exstrophy/epispadias complex. It makes up to 60-70% of the patients seen in this complex. This occurs in one in 40,000 live births, with a ratio of 3:1 male to female. The bladder is open from the top of the bladder through the bladder neck and prostate area, completely through the urethra, to the tip of the penis. The pubic bones are often times widely split.
Clean intermittent catheterization (CIC)
The process of passing a clean (not sterile) catheter, emptying all the fluid, and then removing the catheter. This process is repeated once every 2-8 hours to empty urine.
Cloacal exstrophy Occurs one in 400,000 live births. This is one of the most severe birth defects that are still compatible with life. There is typically an omphalocele, which is a membrane-covered area on the abdominal wall which contains intestinal contents. The bladder is divided into two halves and in the middle of the abdominal wall between the bladder halves lies part of the intestine. In the male patient with cloacal exstrophy the penis is split in two halves, one lying on either side at the base of the bladder. The pubic bones in cloacal exstrophy are typically more widely split than in bladder exstrophy. In females with cloacal exstrophy, the clitoris is divided in two halves, again at the base of the bladder, and the pubic bones are widely split. Oftentimes in cloacal exstrophy there may be two vaginal openings, which is different than in classic bladder exstrophy.
Colostomy Surgical construction of an artificial excretory opening from the colon to the skin.
Continence(relative to exstrophy)
Urinary continence can be defined in many ways. Continence is the ability for the child to hold urine for three to four hours without leakage from the urethra. Continence can be achieved through bladder neck reconstruction and voiding through the urethra which is the preferred manner, or in other cases continence can be achieved by bladder augmentation and the establishment of a continent stoma on the abdominal wall which is catheterized every three to four hours to achieve urinary dryness.
Cystogram An x-ray of the inside of the bladder. This is typically accomplished by passing a catheter through the child's urethra and filling the bladder. Most cystograms are done to look for the presence of reflux of urine back into the kidneys, which is very common in the exstrophy patients, and to measure bladder capacity. Cystograms may be done under anesthesia with gently passing the contrast through the catheter under gravity to accurately measure the bladder capacity and look for reflux.
Cystometrogram A catheter is passed into the bladder and oftentimes a small catheter is passed into the rectum. Gel-like pads are fastened to the abdomen, which are known as electrodes. A cystometrogram is used to look at the pressure of the bladder, the size of the bladder, and whether or not the bladder muscle acts normally.
Dehiscence A wound that has split apart. A dehiscence in the exstrophy population typically means that the pubic bones and abdominal wall closure have split apart and the bladder is reexstruded onto the abdomen wall.
Detrusor muscle The actual muscle of the bladder that is involved in contraction to expel the urine from the bladder.
Diastasis (of the pubic symphysis)
The distance between the left and right pubic bones in a patient with bladder exstrophy or cloacal exstrophy. If it is a big bladder the diastasis tends to be wider, and if the bladder is small the diastasis, or separation, tends to be more narrow.
Distal Anatomically located further from a point of reference than another body part.
Diverted The urine typically does not tend to pass through the urethra. In the past, diverted simply meant that the ureters were placed into a piece of bowel and this was brought to the abdominal wall and placed into a bag. This is still done on rare occasions. The most common diversion these days is a bladder augmentation with a continent stoma placed in a hidden position on the abdomen, which does not leak and which is catheterized at regular intervals. This is known as continent urinary diversion, which is a form of diversion.
Diverticula
A weak spot in the wall of the bladder where a bit of the lining of the bladder extrudes out through this weakness and you see a small "pocket-like" lesion on the cystogram.
Dorsal Anatomically located in front of another body part.
Dorsal chordee An upward bend in the penis when the penis is erect(rigid). In exstrophy children, this is typically part of the epispadias abnormality with a shortened urethra.
Enuresis
The involuntary or uncontrolled discharge of urine.
Epispadias Another part of the bladder exstrophy/epispadias complex. Epispadias by itself occurs in one in 112,000 live male births. Epispadias can also occur in females, occurring one in 400,000 live births.In male epispadias the urethra is open from the tip of the penis, back to under the pubic bone. In those patients which are known as complete epispadias, or penopubic epispadias, the penis is totally incontinent, just as in the exstrophy population. However, the epispadias defect sometimes is not as severe and the urethra can exit out on the shaft of the penis. In these patients there is no urinary incontinence. In the typical female epispadias patient, the clitoris is divided into two halves, just as in female exstrophy.
Fistula
A communication between an inside structure and an outside structure. The typical application of a fistula in the exstrophy/epispadias patient is a small undesired leakage between the surgically reconstructed urethra and the outside of the penis. This is known as a urethrocutaneous fistula. In addition, fistulas can occur between the bladder and the abdominal skin. This is called a vesicocutaneous fistula and is more rare than a fistula on the penis.
Genitoplasty The reconstruction of the female external genitalia in the female exstrophy patient. This typically involves bringing thee clitoral halves together which are apart, as mentioned above, bringing the urethra out as far as one can in the vagina, and reconstructing the fatty tissue over the clitoris to look like a normal mons pubis, which has hair in the adult female.
Glans The tip. The glans penis is the tip, or head, of the male penis. The glans clitoris is the tip, or head, of the clitoris in the female.
Gut (foregut,midgut and hindgut)
Terms which describe the early regions of the developing gut in the embryo. These terms are important in children with cloacal exstrophy, which involves malformation of the junction of the midgut and the hindgut.
Hernia An outpouching of an organ or other body part through a weak spot in the wall that normally contains it.
Hydronephrosis Dilation of the internal collecting system of the kidney. This can be secondary to obstruction at the level where the ureter joins the kidney, or it can be secondary to reflux. More precisely put, the appropriate term oftentimes in the exstrophy population, is hydroureteronephrosis, which typically means some swelling of the ureter from the bladder up to and including the inside of the kidney. Some hydronephrosis is normal and is not uncommon after surgery, but significant amounts of hydronephrosis can be dangerous.
Hypoplasia
Under developed. For example, a hypoplastic glans penis in the male would mean that the tip of the penis is poorly developed.
Hypospadias This is not part of the exstrophy/epispadias complex. Hypospadias is a very common birth defect in males, occurring up to eight per 1000 live births. In hypospadias, the urethra is not at the tip of the penis but is somewhere on the bottom of the penis and can be anywhere from near the anus, on the perineum, in the scrotum, at the base of the penis, on the midshaft of the penis, or even slightly off the mark on the tip of the penis.
Ileostomy The surgical construction of a stoma made of ileum(small intestine) on the skin. Typically in urological patients, a small segment of ileum is separated away from the rest of the stool stream. The ureters are attached to the internal end of the blind-ending tube of ileum. Therefore, urine can flow to the outside of the body through the ileostomy and must be collected into a bag(appliance) since this is incontinent. In the cloacal exstrophy patient, an ileostomy is a stoma made of ileum which is in continuity with the stool stream. Therefore, this ileostomy shunts stool to the appliance; the ureters are not surgically connected to this ileostomy.
Incontinence The inability to prevent leakage of urine or stool.
Inferior Situated more below than another body part.
Inguinal hernia
83% of male patients with classic bladder exstrophy have inguinal hernias. An inguinal hernia is communication of the membrane in the abdomen which carries through the groin and oftentimes into the scrotum. This is a congenital anomaly that is easily fixed by tying off the hernia sac where it exits from the abdomen into the groin.
Lateral
Situated more away from the central line of the body than another body part.
Medial
Situated more toward the central line of the body than another body part.
Mitrofanoff
Paul Mitrofanoff is a French surgeon who in 1980 first described an operation where he disconnected the appendix from the large intestine and connected one end to the skin and the other to the bladder. He specifically tunneled the appendix in the bladder so it would be continent. Therefore CIC could be performed through this channel, the patient would be dry and the patient would not have to wear a bag. The 'idea' is called the Mitrofanoff principle and can be applied in several ways with tubes other than the appendix. Also known as a continent appendicovesicostomy.
Mucosa lining
In the exstrophy/epispadias population the bladder mucosa is the pink tissue that one sees in a newborn exstrophy that covers the detrusor muscle of the bladder, which is mentioned above.
Osteotomy
(osteo=bone; tomy=to cut) cutting of the bones. In the bladder exstrophy population, osteotomies are used to help reconstruct the pelvic bones and the pelvic floor which removes tension from the abdominal wall and bladder closure thereby aiding in the success of the exstrophy reconstruction. The three bones of the pelvic bone are the ishium, the ilium and the pubic. In exstrophy surgery, iliac and pubic osteotomies are commonly performed.
Ostomy
The surgical construction of a new 'mouth' or opening (stoma). This surgery may be done as a temporary or a permanent endeavour. Unless specified otherwise, the stoma connects an organ to the surface of the skin.
Penopubic
Describing something located at the junction of the penis and the pubic(ie. penopubic epispadias).
Posterior
Anatomically located behind another body part.
Proximal
Anatomically located closer to a point of reference than another body part (whereas distal means away from).
Pubic symphysis
The pelvis or pelvic ring is made of two halves. Anteriorly the left and right pubic bone of the pelvic ring is joined by a ligamentous band known as the pubic symphysis.
Pyelonephritis Kidney infection. This is dangerous and requires immediate treatment. It can damage the kidneys, cause scars in the kidneys, and can lead to high blood pressure later in life if the kidneys are damaged.
Rectus fascia
The main abdominal fascia which extends from the lower part of the ribs down to the pubic bones. When the pubic bones are brought into good approximation in the midline, the rectus fascia is brought back to the middle of the abdomen wall in its normal position.
Reflux
The appropriate term is vesicoureteral reflux. This is the abnormal passage of urine from the bladder, up the ureter, and into the kidney. Reflux is graded from grade I to V. Almost all children with bladder exstrophy will have low grade vesicoureteral reflux. This part of the birth defect, as the ureters come through the bladder wall in a very short tunnel and thus an appropriate "flap" valve is not present as in a normal kid, giving urine access to the ureter and kidney. Low grade reflux can be easily controlled with small daily doses of an appropriate antibiotic.
Renal
Pertaining to the kidneys
Retrograde cystoscopy The passage of a cystoscope from the urethra through the bladder neck, and into the bladder.
Retrograde ejaculation
During ejaculation, the bladder neck closes allowing the ejaculate to be expelled at the tip of the urethra. In patients with epispadias, the bladder neck may be unable to close. All or part of the ejaculate enters the bladder and is not expelled. The semen therefore will be mixed with urine and is expelled when the patient voids the next time.
Sacrum
A group of fused backbones located at the caudal end of the spine. They are triangular shaped and are located in the posterior portion of the pelvic ring. These bones are connected to the last vertebrae, the coccyx, and the hipbone on each side. The three bones of the pelvic bone are the ishium, the ilium and the pubis.
Sphincter
The ring-like muscle that maintains constriction of a body passage or orifice and that relaxes by normal physiological functioning(e.g. the sphincter controls urination and keeps us dry between urinations). In the bladder exstrophy population(those patients with bladder exstrophy, cloacal exstrophy, and complete epispadias), there is no development of the urinary sphincter and thus, even after closure of the bladder or urethra, or both, there is still dripping of urine from the urethra. A sphincter has to be constructed from bladder muscle in order for the child to be rendered dry of urine.
Spina bifida
A congenital defect in which the spinal column is opened posteriorly so that part of the meninges or spinal cord protrude. This results in varying severity of neurological loss.
Stenosis
Narrowing or stricture of a duct or passage, usually by scar tissue, such that substances have difficulty passing.
Stoma
A surgically constructed opening, especially one made in the abdominal wall to permit the passage of waste. The stoma is usually on the abdominal wall in a hidden position, but occasionally can be down in the urethra.
Stricture
Narrowing. In the exstrophy/epispadias population, a stricture can involve a narrowing of the urethra after it has been reconstructed to the tip of the penis, or can involve a narrowing of the posterior urethra and bladder neck at the time of exstrophy closure, which is more dangerous.
Superior
Situated more above than another body part.
Suprapubic tube
Also known as suprapubic catheter. A tube that passes through the abdominal wall and into the bladder, allowing drainage of urine from the bladder while healing occurs after surgery.
Symphyseal separation
If the pubic symphysis is surgically brought together, it can grow or spread apart.
Ureter
A muscular tube that brings the urine from the kidney to the bladder.
Ureterosigmoidostomy
This is an older type operation which is not typically done in the United States. In this procedure the bladder is removed and the ureters are reimplanted (moved) into the anterior wall of the sigmoid colon. These patients pass their urine along with their feces, approximately 8 to 10 times per day. This operation is not used much in modern times because there is an increased risk of cancer when there is a mixture of urine and feces in the same chamber.
Ureterostomy
Surgical construction of an artificial excretory opening from the ureter to the skin.
Urethral groove
Another name for the urethral plate, or urethra, that extends from the base of the penis to the tip.
Urethrotomy
Cutting of the urethra internally. This is done with an instrument for the treatment of a urethral stricture.
Urinary diversion
The process of altering the normal channels of urine flow. This can be by using tubes to change the course of urine or by doing one of several surgical operations which can temporarily or permanently alter the course of urine flow.
Ventral
Anatomically located behind or at the bottom of another body part. For example, the top of the penis would be known as the dorsum and the bottom side of the penis is the ventral aspect.
Vesicostomy
Surgical construction of an artificial excretory opening from the urinary bladder to the skin.
LINKS:
http://www.bladderexstrophy.com/
GLOSSARY
Agenesis
Embryologically speaking, absence or incomplete development of an organ or body part.
Anastomosis surgically sewing two structures together, whether it is two ends of the bowel, which is bowel anastomosis, or reimplanting and sewing the ureter to the bladder, which is a ureteroneocystostomy anastomosis. This term simply means sewing two structures together. Embryologically speaking, absence or incomplete development of an organ or body part.
Anomalies Another name for birth defect. More properly, it is termed congenital anomaly in the case of our exstrophy patients, which implies a developmental defect that happened during fetal life.
Anterior
Anatomically located in front of another body part; for example, the anterior surface of the bladder is the front wall of the bladder.
Appliance An adhesive bag worn to collect waste
Augmentation To enhance. In terms of exstrophy patients, augmentation typically means to enhance the size of the bladder with a piece of intestine-typically, the small intestine, large intestine(colon) or in very rare cases, the stomach.
Bifid Forked or split into two parts (such as the ureter or the penis).
Bilateral Occurring in or affecting both sides of the body(ie. both the left and right kidney) .
Bladder augmentation Surgical procedure to enlarge the capacity of urine the bladder can hold. It lowers the pressure in the bladder. Most commonly, a piece of intestine (bowel) is moved, cut open, and added to the opened bladder to make a larger urine container.
Bladder closure The surgical procedure to create a hollow sphere of the exstrophy bladder plate and to place it within the abdomen. It may be the first attempt (primary bladder closure) or the second or subsequent attempt (redo bladder closure).
Bladder neck plasty Another name for bladder neck reconstruction, the muscle floor of the bladder is rolled into a tight tube to create a sphincter-like affect to help increase the strength of the bladder neck area to render the child continent of urine.
Bladder neck suspension The surgical procedure in which stitches are used to permanently sew the bladder neck to the back of the bony pelvis. This helps achieve urinary continence.
Bryant's traction A type of immobilization of the pelvis using pulleys and weights. This is used on patients with classic bladder exstrophy closures who were closed within 48-72 hours of life and without osteotomies.
Calyces The smallest part of the collecting system of the kidneys. The urine is filtered in the cortex or "meat" of the kidney and filters through tiny ducts in the calyces where it begins to be collected and passes down into the pelvis of the kidney before it passes down the ureter to the bladder.
Catheter A hollow, flexible tube inserted into a body cavity, duct, or vessel to allow the passage of fluids.
Catheterization The passage of a tube, either through the urethra into the bladder, or through a stoma in the abdominal wall into the bladder.
Caudal Anatomically more toward the tail than another part of the body.
Cephalad Anatomically more toward the head than another body part.
Chordee A bend in the penis. In the exstrophy/epispadias group, chordee is typically upward in the direction of the abdominal wall. This is part of the total birth defect in this complex. This bend is fixed at the time of epispadias repair.
Classic exstrophy The most common birth defect seen in the exstrophy/epispadias complex. It makes up to 60-70% of the patients seen in this complex. This occurs in one in 40,000 live births, with a ratio of 3:1 male to female. The bladder is open from the top of the bladder through the bladder neck and prostate area, completely through the urethra, to the tip of the penis. The pubic bones are often times widely split.
Clean intermittent catheterization (CIC)
The process of passing a clean (not sterile) catheter, emptying all the fluid, and then removing the catheter. This process is repeated once every 2-8 hours to empty urine.
Cloacal exstrophy Occurs one in 400,000 live births. This is one of the most severe birth defects that are still compatible with life. There is typically an omphalocele, which is a membrane-covered area on the abdominal wall which contains intestinal contents. The bladder is divided into two halves and in the middle of the abdominal wall between the bladder halves lies part of the intestine. In the male patient with cloacal exstrophy the penis is split in two halves, one lying on either side at the base of the bladder. The pubic bones in cloacal exstrophy are typically more widely split than in bladder exstrophy. In females with cloacal exstrophy, the clitoris is divided in two halves, again at the base of the bladder, and the pubic bones are widely split. Oftentimes in cloacal exstrophy there may be two vaginal openings, which is different than in classic bladder exstrophy.
Colostomy Surgical construction of an artificial excretory opening from the colon to the skin.
Continence(relative to exstrophy)
Urinary continence can be defined in many ways. Continence is the ability for the child to hold urine for three to four hours without leakage from the urethra. Continence can be achieved through bladder neck reconstruction and voiding through the urethra which is the preferred manner, or in other cases continence can be achieved by bladder augmentation and the establishment of a continent stoma on the abdominal wall which is catheterized every three to four hours to achieve urinary dryness.
Cystogram An x-ray of the inside of the bladder. This is typically accomplished by passing a catheter through the child's urethra and filling the bladder. Most cystograms are done to look for the presence of reflux of urine back into the kidneys, which is very common in the exstrophy patients, and to measure bladder capacity. Cystograms may be done under anesthesia with gently passing the contrast through the catheter under gravity to accurately measure the bladder capacity and look for reflux.
Cystometrogram A catheter is passed into the bladder and oftentimes a small catheter is passed into the rectum. Gel-like pads are fastened to the abdomen, which are known as electrodes. A cystometrogram is used to look at the pressure of the bladder, the size of the bladder, and whether or not the bladder muscle acts normally.
Dehiscence A wound that has split apart. A dehiscence in the exstrophy population typically means that the pubic bones and abdominal wall closure have split apart and the bladder is reexstruded onto the abdomen wall.
Detrusor muscle The actual muscle of the bladder that is involved in contraction to expel the urine from the bladder.
Diastasis (of the pubic symphysis)
The distance between the left and right pubic bones in a patient with bladder exstrophy or cloacal exstrophy. If it is a big bladder the diastasis tends to be wider, and if the bladder is small the diastasis, or separation, tends to be more narrow.
Distal Anatomically located further from a point of reference than another body part.
Diverted The urine typically does not tend to pass through the urethra. In the past, diverted simply meant that the ureters were placed into a piece of bowel and this was brought to the abdominal wall and placed into a bag. This is still done on rare occasions. The most common diversion these days is a bladder augmentation with a continent stoma placed in a hidden position on the abdomen, which does not leak and which is catheterized at regular intervals. This is known as continent urinary diversion, which is a form of diversion.
Diverticula
A weak spot in the wall of the bladder where a bit of the lining of the bladder extrudes out through this weakness and you see a small "pocket-like" lesion on the cystogram.
Dorsal Anatomically located in front of another body part.
Dorsal chordee An upward bend in the penis when the penis is erect(rigid). In exstrophy children, this is typically part of the epispadias abnormality with a shortened urethra.
Enuresis
The involuntary or uncontrolled discharge of urine.
Epispadias Another part of the bladder exstrophy/epispadias complex. Epispadias by itself occurs in one in 112,000 live male births. Epispadias can also occur in females, occurring one in 400,000 live births.In male epispadias the urethra is open from the tip of the penis, back to under the pubic bone. In those patients which are known as complete epispadias, or penopubic epispadias, the penis is totally incontinent, just as in the exstrophy population. However, the epispadias defect sometimes is not as severe and the urethra can exit out on the shaft of the penis. In these patients there is no urinary incontinence. In the typical female epispadias patient, the clitoris is divided into two halves, just as in female exstrophy.
Fistula
A communication between an inside structure and an outside structure. The typical application of a fistula in the exstrophy/epispadias patient is a small undesired leakage between the surgically reconstructed urethra and the outside of the penis. This is known as a urethrocutaneous fistula. In addition, fistulas can occur between the bladder and the abdominal skin. This is called a vesicocutaneous fistula and is more rare than a fistula on the penis.
Genitoplasty The reconstruction of the female external genitalia in the female exstrophy patient. This typically involves bringing thee clitoral halves together which are apart, as mentioned above, bringing the urethra out as far as one can in the vagina, and reconstructing the fatty tissue over the clitoris to look like a normal mons pubis, which has hair in the adult female.
Glans The tip. The glans penis is the tip, or head, of the male penis. The glans clitoris is the tip, or head, of the clitoris in the female.
Gut (foregut,midgut and hindgut)
Terms which describe the early regions of the developing gut in the embryo. These terms are important in children with cloacal exstrophy, which involves malformation of the junction of the midgut and the hindgut.
Hernia An outpouching of an organ or other body part through a weak spot in the wall that normally contains it.
Hydronephrosis Dilation of the internal collecting system of the kidney. This can be secondary to obstruction at the level where the ureter joins the kidney, or it can be secondary to reflux. More precisely put, the appropriate term oftentimes in the exstrophy population, is hydroureteronephrosis, which typically means some swelling of the ureter from the bladder up to and including the inside of the kidney. Some hydronephrosis is normal and is not uncommon after surgery, but significant amounts of hydronephrosis can be dangerous.
Hypoplasia
Under developed. For example, a hypoplastic glans penis in the male would mean that the tip of the penis is poorly developed.
Hypospadias This is not part of the exstrophy/epispadias complex. Hypospadias is a very common birth defect in males, occurring up to eight per 1000 live births. In hypospadias, the urethra is not at the tip of the penis but is somewhere on the bottom of the penis and can be anywhere from near the anus, on the perineum, in the scrotum, at the base of the penis, on the midshaft of the penis, or even slightly off the mark on the tip of the penis.
Ileostomy The surgical construction of a stoma made of ileum(small intestine) on the skin. Typically in urological patients, a small segment of ileum is separated away from the rest of the stool stream. The ureters are attached to the internal end of the blind-ending tube of ileum. Therefore, urine can flow to the outside of the body through the ileostomy and must be collected into a bag(appliance) since this is incontinent. In the cloacal exstrophy patient, an ileostomy is a stoma made of ileum which is in continuity with the stool stream. Therefore, this ileostomy shunts stool to the appliance; the ureters are not surgically connected to this ileostomy.
Incontinence The inability to prevent leakage of urine or stool.
Inferior Situated more below than another body part.
Inguinal hernia
83% of male patients with classic bladder exstrophy have inguinal hernias. An inguinal hernia is communication of the membrane in the abdomen which carries through the groin and oftentimes into the scrotum. This is a congenital anomaly that is easily fixed by tying off the hernia sac where it exits from the abdomen into the groin.
Lateral
Situated more away from the central line of the body than another body part.
Medial
Situated more toward the central line of the body than another body part.
Mitrofanoff
Paul Mitrofanoff is a French surgeon who in 1980 first described an operation where he disconnected the appendix from the large intestine and connected one end to the skin and the other to the bladder. He specifically tunneled the appendix in the bladder so it would be continent. Therefore CIC could be performed through this channel, the patient would be dry and the patient would not have to wear a bag. The 'idea' is called the Mitrofanoff principle and can be applied in several ways with tubes other than the appendix. Also known as a continent appendicovesicostomy.
Mucosa lining
In the exstrophy/epispadias population the bladder mucosa is the pink tissue that one sees in a newborn exstrophy that covers the detrusor muscle of the bladder, which is mentioned above.
Osteotomy
(osteo=bone; tomy=to cut) cutting of the bones. In the bladder exstrophy population, osteotomies are used to help reconstruct the pelvic bones and the pelvic floor which removes tension from the abdominal wall and bladder closure thereby aiding in the success of the exstrophy reconstruction. The three bones of the pelvic bone are the ishium, the ilium and the pubic. In exstrophy surgery, iliac and pubic osteotomies are commonly performed.
Ostomy
The surgical construction of a new 'mouth' or opening (stoma). This surgery may be done as a temporary or a permanent endeavour. Unless specified otherwise, the stoma connects an organ to the surface of the skin.
Penopubic
Describing something located at the junction of the penis and the pubic(ie. penopubic epispadias).
Posterior
Anatomically located behind another body part.
Proximal
Anatomically located closer to a point of reference than another body part (whereas distal means away from).
Pubic symphysis
The pelvis or pelvic ring is made of two halves. Anteriorly the left and right pubic bone of the pelvic ring is joined by a ligamentous band known as the pubic symphysis.
Pyelonephritis Kidney infection. This is dangerous and requires immediate treatment. It can damage the kidneys, cause scars in the kidneys, and can lead to high blood pressure later in life if the kidneys are damaged.
Rectus fascia
The main abdominal fascia which extends from the lower part of the ribs down to the pubic bones. When the pubic bones are brought into good approximation in the midline, the rectus fascia is brought back to the middle of the abdomen wall in its normal position.
Reflux
The appropriate term is vesicoureteral reflux. This is the abnormal passage of urine from the bladder, up the ureter, and into the kidney. Reflux is graded from grade I to V. Almost all children with bladder exstrophy will have low grade vesicoureteral reflux. This part of the birth defect, as the ureters come through the bladder wall in a very short tunnel and thus an appropriate "flap" valve is not present as in a normal kid, giving urine access to the ureter and kidney. Low grade reflux can be easily controlled with small daily doses of an appropriate antibiotic.
Renal
Pertaining to the kidneys
Retrograde cystoscopy The passage of a cystoscope from the urethra through the bladder neck, and into the bladder.
Retrograde ejaculation
During ejaculation, the bladder neck closes allowing the ejaculate to be expelled at the tip of the urethra. In patients with epispadias, the bladder neck may be unable to close. All or part of the ejaculate enters the bladder and is not expelled. The semen therefore will be mixed with urine and is expelled when the patient voids the next time.
Sacrum
A group of fused backbones located at the caudal end of the spine. They are triangular shaped and are located in the posterior portion of the pelvic ring. These bones are connected to the last vertebrae, the coccyx, and the hipbone on each side. The three bones of the pelvic bone are the ishium, the ilium and the pubis.
Sphincter
The ring-like muscle that maintains constriction of a body passage or orifice and that relaxes by normal physiological functioning(e.g. the sphincter controls urination and keeps us dry between urinations). In the bladder exstrophy population(those patients with bladder exstrophy, cloacal exstrophy, and complete epispadias), there is no development of the urinary sphincter and thus, even after closure of the bladder or urethra, or both, there is still dripping of urine from the urethra. A sphincter has to be constructed from bladder muscle in order for the child to be rendered dry of urine.
Spina bifida
A congenital defect in which the spinal column is opened posteriorly so that part of the meninges or spinal cord protrude. This results in varying severity of neurological loss.
Stenosis
Narrowing or stricture of a duct or passage, usually by scar tissue, such that substances have difficulty passing.
Stoma
A surgically constructed opening, especially one made in the abdominal wall to permit the passage of waste. The stoma is usually on the abdominal wall in a hidden position, but occasionally can be down in the urethra.
Stricture
Narrowing. In the exstrophy/epispadias population, a stricture can involve a narrowing of the urethra after it has been reconstructed to the tip of the penis, or can involve a narrowing of the posterior urethra and bladder neck at the time of exstrophy closure, which is more dangerous.
Superior
Situated more above than another body part.
Suprapubic tube
Also known as suprapubic catheter. A tube that passes through the abdominal wall and into the bladder, allowing drainage of urine from the bladder while healing occurs after surgery.
Symphyseal separation
If the pubic symphysis is surgically brought together, it can grow or spread apart.
Ureter
A muscular tube that brings the urine from the kidney to the bladder.
Ureterosigmoidostomy
This is an older type operation which is not typically done in the United States. In this procedure the bladder is removed and the ureters are reimplanted (moved) into the anterior wall of the sigmoid colon. These patients pass their urine along with their feces, approximately 8 to 10 times per day. This operation is not used much in modern times because there is an increased risk of cancer when there is a mixture of urine and feces in the same chamber.
Ureterostomy
Surgical construction of an artificial excretory opening from the ureter to the skin.
Urethral groove
Another name for the urethral plate, or urethra, that extends from the base of the penis to the tip.
Urethrotomy
Cutting of the urethra internally. This is done with an instrument for the treatment of a urethral stricture.
Urinary diversion
The process of altering the normal channels of urine flow. This can be by using tubes to change the course of urine or by doing one of several surgical operations which can temporarily or permanently alter the course of urine flow.
Ventral
Anatomically located behind or at the bottom of another body part. For example, the top of the penis would be known as the dorsum and the bottom side of the penis is the ventral aspect.
Vesicostomy
Surgical construction of an artificial excretory opening from the urinary bladder to the skin.
LINKS:
http://www.bladderexstrophy.com/
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