My son was diagnosed with VUR (bladder reflux) a few weeks ago after having his first febrile (and only) UTI. He has grade 4 reflux on one side and the other side is totally normal. Also on the right side (the side with the reflux), the renal ultrasound showed that the right kidney is much smaller than it should be. After another test, DMSA, we found out this week that the right kidney is only functioning at around 8%. The good news is that the left kidney is super healthy and picking up all of the slack.
We have been seeing a wonderful pediatric urologist who advised us that because the right kidney is barely functioning it is probably best to remove it. But we sought a second opinion today and were informed that 8% is 'better than nothing', and perhaps doing the repair is a better route.
We don't want our son to suffer from UTIs throughout his life or have other complications because of this small, barely functioning kidney. And we don't love the possibility of the repair surgery not working or "undoing" after a number of years and having an additional surgery in the future. Also we don't want to remove an organ if we don't need to. Of course every case is specific, I'm just wondering if there are some parents out there who have dealt with a similar situation/decision. Thanks in advance.
If it were up to me, I'd try to fix what I can to keep the other kidney. Perhaps the fix will be major. Or perhaps, it will fail in a few years resulting in kidney removal. But at 15 months, I'd would certainly go most conservative.
like you, i'm in favor of keeping all organs intact if possible. my FIL has failing kidneys (started dialysis yesterday) but has existed for years with function from 12-14%. so unless that undersized kidney is actually creating problems, i think 8% is better than nothing, especially with the other functioning fully.
the prospect of a repair surgery now and having it fail and another surgery becoming necessary down the road is real. but IF the prospect is equally likely that the surgery will be a success and your son will have one great and one okay kidney, i'd take those odds.
in your case i think i'd go for one more opinion. we sometimes faff about too long and seek too many opinions, but in this case i think one more professional opinion from a renal specialist is in order.
good luck!
khairete
S.
Have you asked the doctor if the repair surgery will return more function to the smaller kidney? Like is the damage to the tube cause the dysfunction of the kidney, is it the other way around, or a package deal. The last two I think it would make more sense to remove the kidney, the first it may be best to repair.
Of course, not a doctor, but that is just a question I would ask
You are lucky you found out he had the reflux so young. Is it bladder reflux or kidney reflux? That would matter in my answer but since my daughter had kidney reflux I will speak to that. If it's bladder reflux I am not sure the answer is the same since that is not the kidneys that are malfunctioning.
We didn't know it for our daughter till she was 9. She has 38% of one kidney and 62% of the other kidney. She is 14 now, she had the repair surgery at 9.5 years old. Her ureter was also malformed but the doctor didn't know that until he was in there doing the surgery. Our urologist said that she will never regain the function she has lost. She lost it because of scar tissue forming each infection. She was on Bactrim for 8 months before the surgery so she didn't get kidney infections, you could always have him on a life long dose of that as an option. After the surgery she was on it for another 6 months, so it ended up being over a year she was on it, the doc said it wouldn't hurt her to take it every day of her life but of course if you don't need to take a medicine you don't take one. She has UTI's after the surgery, actually they are kidney infections for her not urinary tract ones, but same thing basically.
I can't advise you on what to do without knowing WHY the function of his one kidney is only 8%. No matter what you need surgery to repair the reflux, so you can always say that you want to make a decision based on the condition of the kidneys while they are in there. If the other kidney is not at 100% than I would keep the lightly functioning one. I of course am not a doctor, but I understand the problems.
My one nephew only has a small portion of one kidney, he wasn't born with a full one, and my other nephew has a "horseshoe" kidney, so both of them have things wrong with kidneys but they haven't had to have surgery on them just need to monitor it. As far as I know in the 11 yrs they have been around the one has had one issue with an infection and the other has had no issues. (they are both about the same age, but different families)
Good luck with whatever you decide.
I am with Julie S.
I would want to know if the repair will improve the 8% function and keep him from having repeated UTIs. Because we all know how painful they are and all the antibiotics he would have to take over the years to treat them.
If it would improve function and stop the UTIs then that might be my first thought to try a repair. No one wants their child to have multiple surgeries. However if it would give him years of better kidney health and urinary tract health then even if it had to be redone or the kidney removed later it might be worth it in the long run.
Like Julie said , I am not a doctor either...just trying to think long term.
Your son is so young. This is a life altering decision. I would get as many opinions as possible. Removing a vital organ is not something trivial.
Recommendations from support groups for this condition.
I'd rather have two kidneys than one.
I'd like to know if the surgery would increase the production of the kidney or leave it unchanged?
Why would the doctor suggest complete removal instead of trying to fix it?
How do they know he'll have more UTIs? I will admit I don't know anything about this diagnosis your son has.
The kidney is still functioning, just not optimum functioning. Can you change his diet and would that help function?
so many questions. Find a support group of people who have gone through this and what has helped them.
Oh wow! You must be so overwhelmed!
I think I would take the information from the 2nd doctor back to the first doctor and see what he/she has to say about that. Is there concern that not removing the kidney will one day cause problems? Maybe he/she thinks it's inevitable? Does the small kidney cause UTI's? I think I would make a list of as many questions as you can think of and ask all of them.
Good luck with your decision. Take your time and ask lots of questions. You will know what to do.
Have you gotten a second opinion, from an actual doc/surgeon?
Welcome to mamapedia!! I'm sorry you are going through this.
I would seek a second opinion. I would ask if the repair will give more function and if another surgery will be required down the road. I would also ask if he's eligible for a kidney transplant.
I would prefer to keep the kidney's and see what could be done to improve them. If the surgery will improve it and help - I'd keep it. Your son is too young to have a vote in this so you and your husband really need to talk about it. What are the long-term affects? What will happen if we remove the kidney? I know people live with one kidney (my girlfriend gave one of hers to her husband - freak that she was a match for him!!) she is an adult not a toddler.
Good luck!! I hope that your son gets healthy!
Ultrasounds don't show everything. When he's doing the surgery fixing the ureter/bladder issue he can biopsy the kidney and make sure it's healthy. You can also see a Pediatric Nephrologist for maintaining kidney function.
I am sorry your little one is going through this, this is so overwhelming! Our now six year old was diagnosed with grade 5+ reflux bilaterally when he was 6 weeks old and presented with a fever, which we found was a kidney infection. Thankfully we found this when he was tiny and we began to watch him carefully. He was on prophylactic antibiotics to protect him from infections that would damage his kidneys until he was old enough to have the bilateral reimplantation surgery at his first birthday. I remember feeling so alone. I had never heard of anyone having gone through this before. I searched the Internet and didn't find a lot of other families going through what we were. We did get multiple opinions and chose Dr. Hutchinson at Minneapolis children's hospital. He has been following our son ever since and is now doing great! He does have one kidney that is a little bit smaller and functions a little less. We follow up at least yearly, sometimes sooner based on how he is doing.
I would hesitate to remove a kidney unless you find a physician you completely trust and truly believe that is the only way to help your son. I would do our reimplantation surgery with our son again tomorrow. It was the right decision for us. Are you sure he will suffer more utis with the kidney left in? Once the reflux is repaired, the infections should stop because the urine will now be only flowing out, not back into the kidneys.
I will be thinking about your family. I hope you are able to come to the best decision! If there is anything else you need please reach out!
You might try to find the success statistics for each type of procedure. If the repair has long term success, you may go that route rather than taking out a partially functioning organ.
Obviously none of us are qualified to give advice, but there are a lot of forums out there on every medical topic. You might try to find others in your situation.
I think this is a huge decision. I agree with the second doc though. IF it's not causing health problems that is. If he's getting the UTI's because the one isn't processing urine and it's getting stuck/stagnate and that's causing the infections then I'd say it's too diseased and needs to come out. If it's doing fine but just not processing right then I think the 8% is betting than nothing. What if the other one goes down, then that 8% might be a whole lot.
