Ureteral Reimplatations and Why they Fail….
Everyone who has a child with VUR has heard the statistics on ureteral reimplant surgery. It’s successful 98-99% of the time. 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’ll preface this blog post 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 experience.
So why do ureteral reimplantations fail?
I think the first, most obvious reason is doctor error/incompetence. While we would love to believe that doctors hold some kind of special power of all knowingness, they don’t. They’re people just like me and you. If the doctor doesn’t perform the procedure correctly, it won’t work. So be sure you feel confident with your child’s doctor and don’t be afraid to get a second opinion, or a third.
I often hear that age is an important factor. I go back and forth on this one. The data that I have found suggests that the percentages of infants (under 12 months) having successful surgery is lower than older children, but only by 5-7% (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, although there are studies that show reimplantation done before the age of 3 months, can adversely affect the bladder and how it works later on. I guess my point here is that 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, however 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’m probably a little biased on this one since Boo’s surgery was done so young (5 months) and was unsuccessfull. Even knowing what I know now, we would have still done the surgery because of her situation, but I often wonder if her young age didn’t have some effect on the outcome. Who really knows?
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 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 when the 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. No 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.
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 1 kidney), and has surgery on one ureter, only to develop reflux on the other, once healthy 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 some complications. 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 it may cause the reflux to recur after surgery.
I’m sure that there are some 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. 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, to 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 and corrected before surgery.
While we don’t know for sure why our daughter’s reimplant failed, we do now know that she has some 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.
Stay tuned for my next post… What to do if you think your child’s reimplantation has failed.
Ureteral Reimplantation Surgery
We were surprised to find out that Lizzie needed a ureteral reimplantation surgery at the age of only 5 months. We had known from the beginning that surgery would be needed, but we were expecting it to be at the age of 5 years, not 5 months. So how do you decide when it is time for surgery, and what should you expect once you have scheduled it?
For us, the decision was easy. Lizzie had grade 5 reflux in a duplicated system, and had 4 kidney infections (one of which was a resistant bacteria) while on antibiotics, all before the age of 5 months. We needed to do something, and do it quickly. Most doctors will try and wait until the child is 18 months old if possible. There have been studies showing that the surgery has a higher success rate after the age of 12 months, but if there are multiple recurrent infections, aggressive measures may be needed. The general guidelines for surgery are the following:
- high grade reflux (grades 4 & 5)
- recurrent infection despite antibiotics
- your child is unable to take antibiotics (for whatever reason)
- the reflux has continued over a period of years and is not improving
If your child meets the criteria for surgery, how does the surgery correct the reflux? Children with Primary 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 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. This surgery is very successful with a 95-98% success rate.
So you have decided to do the surgery. Now what? What should you expect, and what do you need to know?
This surgery is done under general anesthesia, which means the child is completely out 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. 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 warned 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.
It’s hard to be prepared for what will happen after surgery. Most children do well with anesthesia, however some children may wake up very upset.Unfortunately you can’t know which direction your child will go until they wake up. 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 the drug will be, 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. Lizzie had 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 which is closed with steri-strips that will either dissolve or fall off over time (in Lizzie’s case, we eventually peeled them off). As another side note, you can no longer see Lizzie’s scar unless you know exactly where to look.Your child will 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 the surgery, however 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 not obstruction. After 4-6 months, the child should have a VCUG to verify that the reflux has resolved. Children should have an ultrasound yearly to check the kidneys, and if scarring is present, 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 low risk in children but can cause complications. In rare occassions, 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 the surgery has failed, further investigation is needed. This might include VCUG, Urodynamics (or Video-Urodynamics) and an MRI.
