Lizzie’s Journey

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.