Ureteral Reimplantation to Correct Vesicoureteral Reflux
It was hard for me to grasp what the doctor was saying when he first told us that our little Lizzie needed a ureteral reimplantation surgery at the age of only 5 months. We had known from the beginning that she would need surgery, but we were expecting it to be somewhere between the age of 3-5 years, not just 5 months old. It was a really difficult time in our lives.
How do you decide when it is time for surgery? And what do you expect when the time comes? For us, the decision was pretty easy since there really were no other options. Lizzie had grade 5 reflux in a duplicated system, and had 4 kidney infections (one of which was a resistant bacteria requiring a pic line) all while on antibiotics. All of this before she could roll over. She wasn’t even 5 months old when we made the decision to have surgery. We needed to do something, and do it quickly. Most doctors will try and wait until a child is 18 months old if possible, just to give the child some time to grow. There have been studies showing that the surgery has a higher success rate after the age of 12 months, however if there are multiple recurrent infections or damage to the kidneys, aggressive treatment may be needed. The general guidelines for surgery are the following:
* high grade reflux (grades IV & V)
* recurrent infection despite antibiotics
* the child is unable to take antibiotics (for whatever reason)
* the reflux has continued over a period of years and is not improving.
Once you’ve made that decision that surgery is the best option, the next step is understanding how the surgery corrects the reflux. Children with Primary Vesicoureteral Reflux are born with a defect in the ureter(s) that allows the backflow of urine into the kidneys. Ureteral Reimplantation Surgery is a surgery performed to change the way that the ureter(s) enter the bladder. The surgeon will make an incision in the lower abdomen, and then into the bladder where they will basically sew the ureter(s) into the proper place. This corrects the valve that was allowing urine to reflux.
Once your surgery is scheduled, what should you expect, and what do you need to know? First you should know that the surgery is very successful with a 95-98% success rate, which means odds are very good that the surgery will correct the VUR. The surgery is done under general anesthesia, which means the child is completely unconscious for the entire surgery. Many children will also have an epidural so that there is no pain for a few hours after they awaken. The surgery generally takes between 2-3 hours, but may take longer if there are duplicated ureters, or if tapering of the ureter is needed. A ureter may need to be tapered (made smaller where it enters the bladder) if it is a megaureter. This may help prevent further reflux by decreasing the size of the opening.
When ureters are tapered, the child may require stents to keep the kidneys drained. When Lizzie had her surgery, we expected a 2-3 hour surgery with possible tapering, and were surprised when it became 5 hours. Luckily, most hospitals are well equipped keep you updated, and we were informed mid-surgery that things would take a little longer. Apparently, while they were performing the surgery, they discovered that instead of 3 ureters, Lizzie actually had 4, which meant there was another ureter that needed to be reimplanted. Just know that there are a number of reasons for things to be delayed, so expect the unexpected.
It’s hard to be prepared for what will happen after surgery. Most children do really well with anesthesia, however some children may wake up very upset. Unfortunately you can’t know which direction your child will go until after it has happened. Your child will have a catheter that may need to stay in place for 1-3 days. In our case, it was removed after 24 hours. Some children may require stents if any type of reconstruction has taken place, and some children may require catheterization for a longer period. Both of these are normal occurances after surgery.
You should discuss your child’s pain management with your doctor and nursing staff before the surgery. You should know what drugs they will be taking, how much will be given and how often your child will/can receive it. On a more personal note here, we had wonderful nurses that made sure Lizzie was comfortable and getting the medicine that she needed, but I have spoken to other parents that have had a very difficult time. You may also want to discuss any other medications your child might need, such as medication for bladder spasms. It is common for children to experience bladder spasms after surgery. Spasms seem to be worse in older children. Lizzie had mild, but frequent bladder spasms and was given Ditropan to help control them. She also struggled with dehydration. Keeping your child hydrated is very important after the surgery. It not only helps recovery, but also helps keep the bladder flushed and for us, helped minimize the bladder spasms. There may also be blood in the urine for a few days up to many weeks. As long as it is not getting worse, it is normal in most children.
When your child gets out of surgery, you can expect them to be very tired and a little out of it for a while. He/she will have a small incision in the lower abdomen (see picture) which is closed with steri-strips that will either dissolve or fall off over time (in Lizzie’s case, we eventually peeled them off). You can no longer see Lizzie’s scar unless you know exactly where to look, so her scarring has been minimal. Your child will usually remain on a course of antibiotics for 7-10 days, at which time they will remain on a prophylactic antibiotic until it is verified that the reflux has resolved.
Children can still get a UTI after surgery, however because of the surgery it should remain in the bladder, and not move into the kidneys. UTI is much less common after surgery, however some children are simply more prone to UTI than others. Children are usually released from the hospital 1-3 days after surgery. They will most often be prescribed a pain medication as well as a medicine for bladder spasms (such as Ditropan). If you feel like your child is having difficulty after the surgery, do not hesitate to call your doctor immediately. If the following symptoms occur, you should call your doctor right away:
* If the child’s temperature goes above 101.4 degrees F
* Excessive bleeding from the abdomen where the incision was made
* Dehydration or inability to tolerated liquids
* Vomiting excessively
* If the child is unable to urinate
About 4-6 weeks after surgery, the child should have an ultrasound to verify that there is no obstruction. After 4-6 months, your doctor may choose to have another VCUG to verify that the reflux has resolved. Children should have an ultrasound yearly to check the kidneys, and blood pressure should also be checked yearly to monitor for hypertension. Some studies have shown reimplantation to be up to 98% successful, but as with any surgery, there can be complications. General anesthesia is generally low risk in most children but can cause complications. In rare cases, obstruction and persistant reflux can occur after surgery. When obstruction occurs, it may be temporary, but the child may need to have the fluid drained from the kidney (this is often done with a nephrostomy). In some rare cases, a child may need surgery to remove the blockage, or to repeat the reimplantation. Deflux has also been found to be effective in some cases of persistent reflux. If you suspect that your child’s reimplantation has not been effective, you can read more about our personal journey with a failed reimplant and what steps we have taken here.
UTI after surgery?
It’s every parents worst nightmare. Your child has had surgery to correct VUR and now they have a UTI. What do you do?
My first bit of advice? Don’t freak out. Not just yet anyway. Surprisingly it’s not that uncommon for kids to get a UTI in the first 6 months after surgery. You have to remember that a ureteral reimplantation doesn’t actually prevent UTI. It does usually lower the incidence of UTI, but it doesn’t prevent it. What it should do is keep any infection in the bladder. A UTI by itself is not dangerous, it’s only when it moves into the kidneys that you have a problem. The reimplantation should ideally keep the infection from moving into the kidneys, but it’s not impossible during the first few months after surgery for a UTI to become a kidney infection even if the reimplantation has been successful. The body needs time to heal and adjust to the new atmosphere.
After a UTI, the first step should be an ultrasound to take a look at what’s reallygoing on. After Lizzie’s first infection post surgery, we did an ultrasound and everything looked good. All of her ureters (she had duplicates) were now in the right place. We decided not to do another VCUG just yet. For one, we didn’t want to risk introducing any new bacteria into her body, and two, she had bladder spasms for a few weeks, so it made sense that she might have gotten a UTI, and unusual bladder pressures may have contributed to the infection moving into the kidneys. For most kids this would have been the end of it. A little hiccup in the recovery, but still a completely successful reimplantation. Unfortunately for the other 1-2% there is just a little further to go.
After our second confirmed UTI post surgery, accompanied by fever, we scheduled another VCUG. Before we made it to the appointment she landed in the hospital with another resistant bacteria, and needed IV antibiotics. She ended up having another pic line placed so that we wouldn’t have to spend the next 10 days in the hospital. Talk about being back at square one! We felt like this was a pretty good indication that the reimplantation had failed. We finally got her healthy enough for the VCUG and discovered that her reflux remained the same. We could actually see all 4 ureters light up on the screen, where before we had only seen three. Lovely. Now what?
We had no idea. You hear about it, read about it and know that once in a very rare blue moon, it happens. You just never, ever imagine it could happen to YOUR child. And then it does. So what now? Now you start testing like crazy. If you haven’t done a urodynamics study, schedule one. One of the major contributors to failed ureteral reimplantation is bladder and bowel dysfunction. A urodynamics test will tell you if everything is working properly or not. It will tell you what the bladder capacity is, whether it is voiding completely, and how the muscles are working. Bladder and/or bowel dysfunction is very often the cause of failed reimplantations. If the bladder is not working properly, the pressures may be causing reflux to occur even if they are placed in the correct place. If you can correct the problem with the bladder, you can work toward resolving the reflux.
In rare cases, reflux can be caused by defects in the spine which is called a neurogenic bladder. If no other cause is found in the bladder, an MRI may be warranted to make sure that a spinal defect is not causing the recurrent reflux.
If a DMSA scan (or Mag3) has not been performed, this might be a good time to do that testing as well. This test looks to see how each individual kidney is functioning and whether or not there are any abnormalities or scarring in the kidneys. Ultrasound is a poor detector of kidney scarring and misses scarring in up to 33% of cases, which is why the DMSA scan is important. If there is no scarring, then you have a little peace of mind as well as some data to compare later if you need it. There’s no such thing as too much information.
I also recommend getting your child’s health records and starting your own little collection of labs and ultrasound results. You may be surprised at the difference between what your doctor says and what he writes down. I also recommend getting a second opinion if at all possible.
Finding the root of the failed reimplant may be difficult, but many failures are related to bladder or bowel dysfunction. There are a number of options to correct these dysfunctions depending on the type of problem . Sometimes clean intermittent catheterization (CIC) is used, sometimes bladder training, and then there are medicines available to control bladder spasms and frequency as well as a number of other options . Once the secondary issues have been resolved, the child will might need some type of additional repair such as reimplantation or Deflux injection depending on the severity of the reflux. Deflux has actually been shown in studies to be very effective in failed reimplants.
If the source of the problem cannot be found, urinary diversions have been very successful in preserving the bladder and kidney function while giving the body time to heal without repeated infection. This also gives you some time to look for answers. In the cases where a secondary condition is the cause (such as spinal defects, DES) the underlying condition must be treated before the reflux can be corrected.
Our daughter’s reimplantation failed in September 2007, and she had a urinary diversion (vesicostomy) placed in March 2008. The vesicostomy has played a huge role in keeping Lizzie’s kidneys healthy. She has had her vesicostomy for 3 years now, and will have it reversed in June of this year (2011). We are not sure what to expect, but I’ll be sure and update on how things progress and what steps we take next. If you would like to read more about her story, please click here.
For more specific information about the causes of ureteral reimplantation failures, click here.
Why Ureteral Reimplantations Fail
Everyone who has a child with VUR has heard the statistics on ureteral reimplant surgery. The success of this surgery is incredibly high at 95-99% , with some studies showing the success rates as high as 98-99% . Odds are, if your child needs this surgery, you will never have to worry about the procedure failing, nor will you ever have to worry about reflux returning. So what about that other 1-2%? What is it that causes reimplantations to fail, and is there anything you can do to make sure it doesn’t happen to your child?
I want to start by saying 2 things: 1- I am not a doctor, not a nurse, not a scientist. I spend a lot of time researching VUR and other renal abnormalities, but I am no expert, so this is in no way medical advice. 2- I have a daughter who’s ureteral reimplant failed and much of this is based on our own personal experience.
So why do ureteral reimplantations fail?
I would say that the first, most obvious reason is doctor error and/or incompetence. While we would love to believe that doctors hold some kind of special power of all knowingness, they don’t. It’s as simple as that. They’re people just like me and you. If the doctor doesn’t perform the procedure correctly, it won’t work. Be sure you feel confident with your child’s doctor and don’t be afraid to get a second opinion, or a third.
Another factor I often hear is age. I have mixed feelings on this one. The data that I have found suggests that the percentage of infants (under 12 months) having successful surgery is lower than older children, but only by a small percentage (I believe I read 92% success rate in one study- I’ll see if I can find it and add a link). I have been unable to find a comprehensive study that looks at all of the age factors, but there are studies that suggest that a reimplantation done before the age of 3 months, can adversely affect the bladder and how it works later on. My suggestion is to wait until after the age of 12-18 months if at all possible. If your child NEEDS the surgery (due to recurrent UTI, renal abnormalities, kidney damage, etc) odds are still majorly in your favor and you should do the surgery. If your child has a lower grade reflux, with no abnormalities or recurrent UTI, it might be beneficial to wait until they are at least 12 months or older. I’ll admit here that I may be a little biased on this one since Boo’s surgery was done so young (5 months) and was unsuccessful. Even knowing what I know now, we would have still chosen to have the surgery because of her situation, but I often wonder if her young age didn’t have some effect on the outcome. There’s just no way of knowing.
Another cause for reimplantation failure is if the reflux is actually Secondary VUR (caused by an underlying condition) and not Primary VUR. There are a number of conditions that can cause this, one being dysfunctional elimination syndrome (DES). There are a number of studies that show DES can slow down resolution rates as well as studies showing that many of the children with failed reimplants have some type of DES. If the underlying condition is not corrected, the reflux is not likely to be corrected. Another condition that can cause recurrent reflux is a neurogenic bladder. This can be caused by occult spina bifida, tethered spinal chord or other spinal defects that disrupt the nerves in the bladder.
Another more rare condition is called a non-neurogenic neurogenic bladder (Hinman-Allen Syndrome). In this condition, there are no actual defects to the nerves or spine, but the nerves act as if there is damage. When a child witholds urine, it causes the bladder to react differently and extra pressure is put on the bladder which can cause secondary reflux. Unfortunately, many of these issues will not be detected until a reimplantation has failed. One important thing that you can do as a parent is to be hyper aware of your child’s bathroom habits. Not fun, I know, but urinary retention and constipation have both been proven to slow the resolution of reflux as well as cause UTI. That’s a bad combination for any kid with VUR. Maintaining healthy bathroom habits may go a long way in avoiding recurrent UTIs and in possibly avoiding more difficult complications like Hinman-Allen Syndrome.
Contralateral reflux has also been identified in rare cases when doing the reimplant on only one ureter. This does not happen often, but there are instances when a child only has unilateral reflux (reflux in only 1 kidney), and has surgery on one the ureter, only to develop reflux in the other side after surgery. I haven’t ever seen a really good explanation of why this happens, but I would assume that it has something to do with the pressures in the bladder more than where the ureters are actually located. Problems with bladder pressure can cause a number of problems in the genitourinary tract, including reflux.
Megaureters also may cause complications with surgery. In the majority of cases, if there is a megaureter present at the time of reimplantation, the surgeon will taper the end of the ureter making it smaller and less likely to allow the reflux of urine. If this is not done the reflux may continue after surgery.
I’m sure that there are other more rare causes of failed reimplantations, but these are the major contributors. I would say that by far, the reason is usually dysfunction in either the bladder or bowels for whatever reason. The best thing that you can do as a parent is to be sure that you are familiar with all of the procedures, possible outcomes and alternatives available to you. If you feel like your child is having any trouble with voiding, whether it be infrequent, frequent or other voiding issues, be sure and discuss it with your doctor before the surgery. If your child is dealing with any constipation issues, these need to be addressed before surgery.
While we don’t know for sure why our daughter’s reimplant failed, we do now know that she has some type of dysfunction in her bladder which is likely causing her continuing reflux. She has a grossly enlarged bladder (which we did not know before the surgery) and struggles with constipation on a regular basis. If it hadn’t been for these 2 factors, we might be in a much different situation now, but like they always say…. hindsight is 20/20. Sometimes there is nothing you can do to prevent a failed reimplant, but being diligent and making sure that there are no voiding issues may go a long way in ensuring a successful reimplant.
For more information about what steps you should take if you believe your child’s reimplantation has failed, please click here.