Circ for boys with PUV?

[momtomore]

Sorry this is such a long post... I am looking for reasons why I would not want to circumcise a boy with Posterior Urethral Valves. From what I have learned in my research so far, we have decided we probably will circ but I don't want to regret that decision later and am trying to get as much information as I can about the counter arguments.

My new LO (I am 33 weeks pregnant) was given a probable diagnoses last week of having a Posterior Urethral Valve. Fortunately my amniotic fluid levels are good and he was given a 97% survival rate (his is a mild/moderate blockage of the urethra). They can fix the blockage with surgery shortly after birth but there has likely been permanent damage to his system and he will probably suffer from urinary reflux and incontinence (his bladder is enlarged and the bladder wall has already thickened, his ureters are enlarged, both kidneys are enlarged and one kidney looks somewhat abnormal) and boys with PUV have a 30% chance of having total kidney failure and needing dialysis/transplant at some point in their life, usually before puberty.

From the few studies I could find on PUV that discuss circumcision, boys who have PUV and are circumcised have about a 20% chance of having repeat UTI's and boys who are not have about a 50% chance of repeat UTI's. And this is when they are on daily prophylactic antibiotics (recommended for all PUV boys for the first few years of life). If he is not on daily antibiotics, he is virtually guaranteed to have repeat UTI's circumcised or not. The reason I am concerned is that with reflux, if he gets a UTI, the infected urine can backwash and lead to a kidney infection, meaning more damage to the kidney, meaning even more likely he will suffer kidney failure. Since the pediatric urologist will already be performing surgery on him a few days after birth, he would be anesthetized for the procedure.

I am hoping someone can tell me they wouldn't circ in this situation and give me some good backup information as to why.

[Fellow Traveler]

I think it might depend on the grade of the disorder wouldn't it? I am sure there are mild to severe forms and if so I might wait to find out how bad it is. You may already know but it's the first thing that comes to my mind.

ETA: I want to say that I haven't researched this particular aspect very closely but I will say that this seems like one of those very specific situations where careful consideration is necessary; clearly that is what you're doing. Hopefully, there are a few parents here who've been in this situation too and can give you better guidance. And welcome to the board.

ETAA: If it is within the realm of possibility I would try and find an explicitly anti-circumcision pediurologist for a second opinion. I don't know where you are but NOCIRC can put you in touch with one. You could get an honest assessment from them about your options.

[Evergreen]

I will be the first to admit I am pretty ignorant about this but my first thought is if he is going to be on prophylactic antibiotics anyway wouldn't that diminish the chances of infections enough to make circumcision a non issue?

* Nevermind I had misread the OP. Maybe ask the doctor if there are any tricks or tips he has for keeping infections at bay.

[MCatLvrMom2A&X]

After a quick google search there is no way I would circ. The issue is inside the penis not with the foreskin at all. The foreskin is there to protect the boy and there are no studies showing urinary reflux is benefited by circ.

I would be sure to tell them not to forcibly retract his foreskin during surgery and tell them to leave it alone.

Before I would even consider it they would have to provide research on this condition for a infant that proved beyond doubt that the foreskin had something to do with UTI because it makes NO sense at all that an internal abnormality would be related to an external body part that has been proven to prevent UTI as long as proper care was followed. ie leaving it alone and never ever allowing retraction.

[Crunchy Frog]

I'm really not familiar with this issue, and so could not provide you with a valid opinion of what you should do. It may very well be that this is one of the few genuine medical indications for an infant circumcision. I also would get a second opinion though, and see what they say about the level of severity and how that would impact the relative risks.

One possible consideration, if you decide to go through with it, is to try to find a surgeon who will preserve as much of the erogenous tissue as possible. This would mean taking more of the outer foreskin and leaving more of the inner (where most of the nerve endings are), as well as ensuring that the frenulum is preserved.

I'm sorry that you're having to deal with it. It must be very difficult to have to see your baby undergo surgery at such a young age. Best of luck to both of you in getting through this.

[LavenderMae]

I know very little about VUG but I did happen upon this; QUES: My son has had several urinary tract infections. Our family doctor says it is because we did not have him circumcised. But that seems a harsh measure to us. What should we do?




ANS: The risk of a urinary infection in the first year of life is less than 1 in 100, but they do occur. Even so, you made the correct ethical choice when you kept your son intact. Treatment by antibiotics is usually all that is needed, same as would be true for girls (who, lifetime, get many more urinary tract infections than boys ever do.) Circumcision is NOT the ideal solution. It is possible for a child to have a congenital defect of the genitourinary system such as an incompetent connection between his kidneys and bladder, or bladder and penis, that might cause recurring infections. This can be detected by a specialized x-ray of the entire genitourinary system. But such anatomical anomalies are rare and unlikely, though not unknown. A ‘foreskin-friendly’ urologist could help you if your son’s infections indicate a more serious underlying problem which needs surgical correction. Circumcision, however, would do nothing to solve a genitourinary anomaly, and aside from being inappropriate medicine, may create problems, –including infection– of its own.
http://www.doctorsopposingcircumcisi...q.html#anchor7


I would find a doctor with out a bias for circumcision and real knowledge of normal male anatomy and VUG before I made a decision.

[tutucrazy]

Those percentages for recurrent UTI are probably WAY off. Firstly, recurrent UTI has little to do with foreskin and EVERYTHING to do with care. If you are trying to retract the foreskin you will undoubtedly introduce harmful bacteria. By retraction I also mean any manipulation of the foreskin toward the body. You see most doctors just can't take their hands off a foreskin and feel the need to try to retract, which is very harmful. Foreskin, if cared fore properly (meaning leave it alone) will actually protect against recurrent UTI. This is b/c the foreskin is a sphincter and only relaxes to allow urine out. Also, it is tightly fused to the head of the penis. Here is an article that explains how foreskin protects against UTI and how breastfeeding is the single best thing you can do to avoid UTI. Recurrent UTI in boys would be caused by: forcible retraction, frequent catheters and urinary tract abnormalities. Foreskin itself has zero to do with it.

Hope this helps! Pm me if you want more info about my research on the foreskin and UTI.

http://www.nocirc.org/statements/breastfeeding.php

[eepster]

While I am not familiar with the specific condition you are discussing, I have done some general reading on this subject.

Intact boys with congenital urinary tract anomalies tend to be more symptomatic and get dx sooner b/c of this. So, my first concern would be that circumcised boys would actually be having the same 50% with recurrent UTIs, but that only 20% got dx; meaning that 30% of circumcised boys went undx and untreated. I would look at the studies very carefully to see how they came up with 50% vs 20% before trusting those #s.

A site I have found very informative in general about UTIs and circumcision is this http://www.cps.ca/english/statements/FN/fn96-01.htm .

Another concern would be the general risks associated with any surgery. The greatest risk in terms of immediate surgical complication is hemorrhage. If he has already lost blood during the necessary surgery loosing more during the unnecessary one could be a big problem. Then there is the possibility of meatal stenosis, which occurs in 10% of curcumcised boys, I would think that would be very problematic for a boy who already has urine flow problems.

Of course there are all the usual reasons to avoid circumcision, I don't know how any may relate or not relate to his condition.

I think the first thing I would do is look at what the reccomendation is for boys with the condition your DS has in countries, with good medical care standards, that do not routinely circumcise, such as Ireland, Holland, Sweden, Italy, Japan, etc, etc, etc.

[tutucrazy]

Btw, I have a friend with a son who I believe has this same condition. Her son is intact and never had a recurrent UTI. He was on those antibiotics for the first year of his life. He is still breastfed at 14 months, which is as I mentioned before an important way to reduce the risk of recurrent UTI. She was just telling me the other day how glad she was that she didn't buy into the foreskin/UTI myth, even though many people pressured her to circ. Those studies are so flawed, its amazing there are still doctors who believe them.

I hope you protect your son. There simply is not enough sound evidence to support circumcision as an effective way to reduce the risk of recurrent UTI in infants with abnormal urinary tract.

[momtomore]

Thanks for all the great ideas! We are still researching to figure out what the best choice will be for our son and every thought, link, suggestion... is very helpful in sorting out myth from fact as to whether or not circ'ing will increase or reduce his risk for needing a kidney transplant in the future. We have an upcoming apt with the pediatric urologist and I want to arm myself with best information possible before bringing up the topic. So thanks again!

[TCA2008]

To OP:

My CIRCUMCISED at birth husband had reflux, numerous UTIs in childhood, and required surgical correction. His sister had reflux so bad that she completely lost a kidney. My son, who is NOT circumcised, also was diagnosed with reflux. He is now 8 years old and completely fine - he did have 1 UTI at 3 months of age, but the antibiotics took care of it.

There are many factors to consider, that any studies on UTIs in America, in general wouldn't have taken into consideration. First of all, breastfeeding has been shown to greatly reduce UTIs - are you going to exclusively breastfeed? Second, the severity of the UTI and damage caused is dependent on how long the UTI festered untreated. I knew I would be a vigilant mom and take my son in to be checked with the first sign of a fever, so any UTI could be caught and treated right away, significantly reducing any chance for damage.

Obviously, as a mom, you need to make the best decision for your son. However, circumcision will not solve his problem, and it only MAY possibly reduce, but not eliminate his chances for problems - or it may do nothing but add another surgery to his life - but it will not change treatment plan one way or the other. It also may not make any difference, and puts him at risk for other problems - circumcised boys have a 5-10% chance of meatal stenosis, for example. There are the risks of penile damage (like the recent $2.3 million settlement in Atlanta for a boy who lost part of his glans). If there were no downside to circumcision, and there was a chance it would help, then this would be a no-brainer. But you have benefits and risks to consider either way.

Where do you live? I know of a great pediatric urologist in the DC area who I would completely trust with his opinion of the situation.

Circumcising your son at birth will change absolutely nothing about his condition or treatment. You could alternatively consider making a deal with your son's urologist to wait and see at 6 months and then re-evaluate the situation - at 6 months, your son would also be given full and complete anesthesia. You can try exclusive breastfeeding, prophalactic anti-biotics, being very vigilant about bringing him in at the first sign of a fever, and never allowing anyone to mess with or attempt to pull back his foreskin (which increases the chance of bacteria making it up). If over the first six months he indeed develops numerous UTIs, you could agree to try circumcision to help. If he doesn't and the prophalactic antibiotics seem to be working, leave well enough alone.

I know this is a tough situation, and I really don't think there is good accurate research out there on this. It sounds like a tough decision for you, and I applaud you for attempting to research fully.

I also wonder how this situation would be handled in England, Australia or any European country, where circumcision isn't routine. Perhaps you could get on some boards with European moms (or some European moms could chime in here) and find someone that could ask their European doctor what standard protocol is for his condition in their country. I would be greatly swayed by that information myself - if doctors in places where circumcision is not common recommended circumcision for this condition, that would sway me far more than an American doctor recommending it, because so many America doctors recommend circumcision unnecessarily for so many things.

[Yulia_R]

I highly suggest contacting Doctors Opposing Circumcision and talking to them (they are MDs); their contact info http://www.doctorsopposingcircumcisi...t/contact.html

Also I would recommend contacting Marilyn Milos (founder of nocirc). She is a R.N. She is awesome and is always happy to answer parents questions. She has three circ'd sons (which she deeply regret). Can somebody please help with her contact info?

[Quirky]

I am on my iPhone now and can't post exact links but you should read up at the following sites:

www.cirp.org (medical journal articles organized by subject). There is a section on UTIs and I also urge you to read up on the structure and function if the foreskin, particularly the papers by Taylor et al published in the British Journal of Urology and the paper by Sorrells et al from the same journal.

The Taylor papers are summarized at http://research.cirp.org

these are critical to read and understand because the foreskin is a hugely important part of the penis, not just a minor flap of skin. It contains half the nerve endings of the penis. The five most sensitive parts of the penis as demonstrated by standard neurological testing are on the foreskin, but the most sensitive part of the cut penis is the circumcision scarline.

The reason this is importtant is that, in weighing costs and benefits, you have to weigh the loss of the foreskin, the destruction of the frenulum, and the loss of the gliding action of the foreskin during sex. Because you are making a decision that will affect your son's body for his entire adult life, not just his childhood.

This is on top of the risks of circumcision that are directly relevant to him as a baby, including pain and trauma (not just a risk but guaranteed), rusk of bleeding and infection, and meatal stenosis (a complication that occurs in 10% of circed boys because the meatus [urethral opening] is no longer protected by the foreskin and becomes narrowed with scar tissue, often requiring surgical correction).

You need to ask yourself, too, if you were pregnant with a girl with the same condition, would you contemplate genital surgery on her to remove her clitoral hood and part of her clitoris? Because that's what male circ is equivalent to. It's only because American doctors are so totally ignorant of the structure and function of the male foreskin that they advocate for its removal on the off chance that it might prevent this, that, or the other when they (and parents) would never in a million years consider the equivalent surgery for girls.

This us a situation where you really need to become self-educated and do your own research in the journals as you can't trust the vast majority of US-born or US-trained doctors to know much if anything about the structure and functions of the whole penis and the true ramifications of circ.

[Quirky]

More specific links:

http://www.cirp.org/library/disease/UTI/

This is a critical page because it analyzes the flaws in the leading papers that purported to find a link between intact status and increased incidence of UTIs.

Also from this page:

National Institutes of Health Recommendation

The National Kidney and Urologic Diseases Clearinghouse (NKUDIC), a service of the National Institutes of Health, maintains a comprehensive set of pages, listing the known causes of urinary tract infections in adults and children. NKUDIC does not suggest circumcision as a prevention or cure of urinary tract infection.

Some of the links also question the link between UTIs and end-stage renal disease:

http://www.cirp.org/library/disease/...narasimhaiah1/

Definitely read this link: http://www.cirp.org/library/disease/UTI/robson1/

Wennerström et al4 from Goteborg, Sweden, a center that has provided decades of excellent research on UTI, recently reported a long-term prospective follow-up on 1221 children (232 boys) with a first recognized symptomatic UTI during the years 1970 and 1979. Circumcision is not common in Sweden. Only 21 boys were found to have scarring and, of these, 18 (86%) were considered to have primary or congenital scarring, rather than acquired resulting from UTI. The authors note that "chronic renal failure caused by pyelonephritic renal scarring in Swedish children has decreased during the last few decades. In fact, in a population of 8.5 million, no child has been registered in this category during the last decade."4 Based on Swedish epidemiologic data, we estimate that >500 000 circumcisions are necessary to prevent end-stage renal failure in one boy.5-7

We suggest it is time to put the specter of ESRD as a consequence of failure to circumcise into the history books as an anachronism previously fed on well-intentioned speculation but less enlightened data.

If I were in your shoes, I would do everything in my power to avoid separation from your baby at birth if at all possible given his condition, to make sure he is colonized with your beneficial bacteria. Doing everything possible to ensure a vaginal birth and avoiding a c-section, again to ensure colonization with your beneficial bacteria, will help prevent E. coli from taking hold in the hospital. Breastfeeding without any formula supplementation if at all possible will also help prevent UTIs, and getting him on a high-quality probiotic for babies to help counteract the effects of long-term antibiotics will also be helpful in ensuring that he's got good colonization with beneficial bacteria to crowd out the E. coli.