Hypospadias

[Nebulousness]

Just looking for support and if anyone has any experience with their own children. Nobody but me and DH know about our son's hypospadias so I have no support in real life. I might talk to someone though.

My ds has just turned one. He was diagnosed with hypospadias within a few minutes of birth. At the time, we were in shock after a rather difficult labour and it was all rather minimised by the staff we saw. He's since had an appointment with the paediatric urinary surgeon's team and they said it is serious enough to need surgery and they would see him at 9 months. But he's now 12 months. I've rung once to chase it but was told he's on the list. I do plan to ring again.

I don't even know if surgery is the best way forward. I dread that there might be complications and he might have a lifetime of issues as a result.

It sounds stupid but I also hate the fact it is classed as a defect. My baby is not defective and I don't want to send him the message that he is by us putting him through surgery. I cried a lot about this in the early days, being told right from the start that my baby who is perfect in my eyes is seen as defective by the rest of the world. It makes me want to protect him from such cruel views.

But then I listen to what the doctors say and that he needs it so he can pee standing up and make sure he can have children later on.

This feels like such a massively overwhelming decision and I really am struggling to know what to do for the best. I hate the idea that he would one day resent us for making the wrong decision (I have done lots of reading online and come across adults who wish they hadn't had surgery).

I also worry that I did (or didn't do) something during pregnancy to cause it.

Basically, I have a ton of mum guilt about this and I feel a bit paralysed by it. I know I'm overthinking and most of the time I just don't think about it at all and enjoy spending time with my ds but when I do stop and think about his future, it overwhelms me.

I know this isn't a condition that is easy to talk about but I would really appreciate hearing anyone's experiences, especially if you're waiting for surgery too or if your son has been through the surgery.

I don't have experience of this particular condition but I know how hard it is making a decision for a future version of your child. I am making a decision for my son based on the best evidence possible, if you didn't make this call what are the implications for him?

www.gosh.nhs.uk/medical-information/hypospadias

[Waves - you are not alone!]

We also have a (nearly 3 year old) son with hypospadias, though in his case the condition is fairly mild ('distal hypospadias'); he has a hooded foreskin, and the urethral opening is at the very tip of the underside of the penis rather than in the centre of the glans.

At his nine month review we were told that it was a 'borderline' case in which surgery wasn't strictly necessary - his ability to urinate standing and his sexual function were unlikely to be (very) adversely affected, and the main reason for operating would be cosmetic, to make his penis/foreskin look more 'normal'. We decided, with the support of a sympathetic consultant, not to opt for surgery, but to wait until DS is old enough to decide for himself whether he wants the operation.

As with you, it was diagnosed a few minutes after his birth by the midwives, who weren't unduly concerned about it. The implications didn't really sink in for me until much later. At the time it was rather overshadowed by the fact that - completely unexpectedly - DS was born critically ill ('dying' was the heartening term used by the doctor who picked up on the issue), and needed life-saving surgery at 2 days old. Thankfully that story has a happy resolution, but after a month in NICU and on a children's surgical recovery ward, DH and I were rather biased against sending DS for any surgery not strictly essential!

Like you, I felt quite indignant at the idea of his hypospadias being thought of as a 'defect', which sounds so harsh and judgemental - we prefer to think of it as just a 'difference'.

If I'm honest, I also found it unusually difficult to form an opinion on the best way forward as, not being male myself, I felt I couldn't fully appreciate the practical/emotional challenges he might face, e.g. I've obviously never used a urinal myself, so have no idea how much anyone else might or might not notice how he looks in that sort of situation. This was the sort of thing I found helpful to discuss with DH and the (male) consultant, and their thoughts firmed up my inclination not to go for the operation yet.

How borderline is your son's case? We were told by our consultant that if he were in our shoes, he wouldn't operate just for cosmetic reasons, but if the condition had been more severe it wouldn't really have been optional - surgery would have been necessary to ensure a fully functioning penis.

I hope you hear back from your hospital soon. I do appreciate how difficult it is trying to deal with all the emotions it stirs up

Goodness that was long, wasn't it!

Thank you all for your replies. It really helps to know that I'm not completely alone. I know it's a pretty common condition (relatively speaking) but it must be that very few people talk about it as I'd never heard of it. It doesn't help that DH doesn't really help with decision-making in our family. He very much does care but he procrastinates and buries his head, then says he can't think it all through properly so inevitably things like this end up being down to me.

Our son has a subcoronal hypospadias according to the surgeon's letter and he also has a hooded foreskin. There is no indication of severity though and it wasn't really discussed with us, other than to say he would need the surgery for cosmetic reasons but also so he could pee standing up and hopefully make a baby in later life (should he want to!). The doctor thought he would need the surgery for reasons other than cosmetic; I did ask him this directly. We didn't see a consultant unfortunately though, but a more junior member of his team. I think I need to ask more questions and understand more about the surgery in my son's case.

I want to trust what the doctor says but in the back of my mind is all the info online (there's a lot!) about how most boys with milder forms don't need hypospadias repairs and even describing it as a human rights issue if parents put their sons through surgery at a young age. That, combined with reading views of adult men who've had lifetimes of pain, physical and psychological issues, leading them to wish they never had the surgery, really makes me think twice about consenting when DS could have a say in it himself later.

My mission for this week is to try and find out when he might be seen, given that he's now three months older than the timescale they gave. I have so many questions.

It would definitely be easier to make this decision if I had a penis and could understand with firsthand experience what the implications might be!

Thanks again for sharing your thoughts and experiences.

MissElizaBennett I'm so sorry to hear your son was so ill at birth and that you went through so much. That must have been incredibly tough and I can imagine that really helped to put the hypospadias issues in perspective. It makes a lot of sense that you would then avoid surgery that wasn't completely necessary. I hope he's ok now. Thank you for sharing your experiences.

Ds has a hypospadia repair when he was 18 months old.

The week after was a pain while he was catheterised and had to be “double nappied” but it was soon over with.

Because he was so young he was unaware of what it was so I think that was the better option than the potential for embarrassment at a later age.

Thank you Sirzy

The later embarrassment is definitely one of the biggest reasons we will probably get it done now and DH’s initial reaction was that we should do it while he’s young, which carries a lot of weight for me given that he actually has a penis.

Please don’t feel you have to answer these questions if they’re too personal but was the surgery a success first time with no signs of any fistulas? How much pain was your son in? And did it look more normal straight away or take a while? I’m assuming the surgery involved circumcision? Sorry for asking questions and please don’t feel you have to answer if I’m being too intrusive. I’m just trying to prepare myself for how things might be afterwards.

Thank you for sharing your experience.

DS has hypostasises. His is very mild, similar to elizaBennett’s DS, the opening of the urethra is slightly below central at the top of his penis, but he does have a hooked foreskin. He is now nearly 5 and has just stared school. Occasionally he gets bits of fluff caught under his foreskin and it gets a little sore, but nonstop things are fine for him. DH and I really can’t decide whether he should have surgery or not. When we saw the consultant at about 13mobths he suggested circumcision to remove their foreskin and that the urethra would be fine where it is.

The midwives told me about it as they handed him to me, but frankly I couldn’t care less. It had been a horrible birth experience from my perspective and, having not really seems many baby boy penises before, I didn’t really know any different.

I worry about Ds when he becomes sexually active and whether it would bother him then that he is slightly different, but I’ve never really paid too much attention to what any sexual partners look like so I’m not too old I worried for him. He can point and shoot up a Tree, that’s all he cares about right now!

DS had surgery for hypospadias (and a circumcision at the same time) when he was 15 months old. It was uneventful- as a bonus he potty trained himself at the same time because he couldn't wear a nappy whilst he was in hospital. That was 35 years ago.

Thank you MummySparkle

I was exactly the same when the midwife said hypospadias on the first day. I didn’t ask what it was or even remember she had said it until it was mentioned again on the second day and then it became a bit more of an issue that the paediatric team got involved with while we were still in hospital. So on that first night, I was changing his nappies unaware that what I was seeing was different to how it should supposedly be.

I have wondered if fluff would get caught in his foreskin once he’s out of nappies if he doesn’t have surgery. It’s good to hear it’s not a major issue though.

I think it’s the worrying about the long term future that really overwhelms me, especially as I doubt he’ll talk to me about it when he’s an adult so I may never know how he feels about it. Not that I think he should want to discuss his sex life with me!! But I hope he doesn’t struggle with it alone if it does become an issue.

I actually think one of my exes may have had a hypospadias repair looking back now. He was circumcised and said it was due to an operation when he was young. He was really happy at the time that I didn’t comment on the appearance of his penis but it just wasn’t a big deal to me. Hopefully this is how most women would react faced with minor differences.

I don’t think my son will be able to point and shoot. If he pees while standing at the moment (he’s in pull ups so stands for most nappy changes), it goes down and lands between or just in front of his feet on the changing mat. It never shoots up in the air like you hear warnings of while changing little boys nappies! On the plus side, I’ve never had a face full of wee!

Oh thank you tiddlywinks! It’s so good to hear of a successful surgery that clearly hasn’t caused issues for a long time. I think I’ve been reading far too many horror stories. How good that he potty trained himself! That would be a massive bonus I hadn’t even thought about!

My son had sub-coronal and hooded foreskin. We live in a country where everyone gets naked all the time and kids shower together in school aged 6 so my husband particularly wanted it done. He had a foreskin repair rather than circumcision. Surgery aged 11 months went really well apart from the stress of minding the catheter the week after. He's now nearly three and was the easiest of my lot to potty train. No issues so far but I do worry having read the stories amid adults bitter about having had surgery...

Hi @Nebulousness my son is 16 months and we are waiting to hear about his surgery (they told us it would be before 1 but the waiting lists are very long in our trust). He has a moderate/severe case of hypospadias. The hole is in the middle of the shaft and he has hooded foreskin.

Our experience of the diagnosis was very similar, it was a passing comment by the midwife when she was writing down his birth weight etc after a traumatic labour and c-sec. I'd never heard of the condition before and due to lack of information about it in hospital I googled it and came across some rather vile newspaper articles.

I think in these kind of situations all we can do is go on the recommendations by the urologist. I am terrified that the surgery will lead to more surgeries, the urologist did not help me with this worry as he rather unhelpfully said 'it depends on who's doing the surgery, I can't do your sons'. Every day I'm in two minds about the operation.

My son (now 7) had this he had an operation at alder hey when he was around 1 to fix it. It was only a day he case he came home the same day. It's probably more common than you think.
Ds doesn't remember having it done.
After the op it was tricky as they leave a catheter in for a week whilst it heals. Meaning I had to double nappy him. I had to cut holes in the front of the nappy so his Willy came through it so when he had a poo it didn't go near the catheter or willy to cause infection. The inner nappy for poo outer nappy for wee. He's been absolutely fine since had regularly checks for years after it. I was told it's possibly genetic if you have another boy he could also have it, although my other 2 boys didn't.

Just wondering how are the children doing now? My 8 week old son has hypospadias and I just feel so overwhelmed by all I'm reading

Since MN now bumps old threads onto I'm On - curious how everyone is getting on including Ariel? DS3 has a very mild coronal hypospadias and we are looking into whether to operate now he is 12mo. The surgeon says either now, or at 5-6, or leave it up to him as an adult, but that surgery post puberty is less successful. DH has a slight fertility issue which has about a 50% chance of being passed on so he leans towards fixing this since there is a tiny question mark about the possibility of it affecting fertility due to confused sperm being shot in the wrong direction. I lean towards don't do unnecessary surgery - but if it's minor and has benefits, then it makes sense to consider it.

Uhoh's post explaining the double nappy was particularly helpful - I had thought all the double nappy comments were about accommodating a large dressing, not separating wee/poo! Absolutely genius - this was something I had really worried about, so thank you for this insight.

I've seen on some other posts about not being allowed to use ride on toys for a while after surgery. What about things with a five point harness? What do you do about car seat, buggy etc? I suppose I could not strap him into the buggy, but car seat is non negotiable. Maybe I could borrow a shield type one for the recovery period.

I had also read a load of horror stories online (but also stories of adult men who were really upset they hadn't had surgery when young!) but also trying to keep in mind that people only really look up support groups/post in them when they are struggling. If everything is going well then they wouldn't really need the group. And it doesn't sound like the condition needs any managing really if the surgery goes well or isn't needed - just learning how to wee and that's about it.

Hi @BertieBotts my previous name was ponderland. In the interest of full disclosure (sorry this isn't a positive story I'm afraid)

My son had his surgery and I wish we'd never bothered it was a nightmare and a lot of trips to a&e waiting around for the paediatric urologist (no surprise there isn't many of them around, ever!) my son had an infection and flap necrosis which led to a complete breakdown of the surgical site, two urine streams and an incredibly poorly child. On call Urology wouldn't see him even though his wound stunk to high heaven of fish from about two days post op (infection and flap necrosis is incredibly rare so they just assumed it wasn't anything without seeing us, sent us home after waiting 9 hours in a&e to boot as the urologist forgot about us and went home!!) at dressings removal the nurse tore some of the stitches because the dressings didn't soak for long enough and it took 3 adults to hold him down to have it all taken off. A junior doctor looked at the wound afterwards and exclaimed 'all fine' he had terrible bladder spasms and do not underestimate how badly a catheter and a small child mix, for a week no less! My god.

Eventually the urologist saw us who did the surgery and recognised straight away the absolute fuck up of the whole surgery and post surgery. He then had to have a repair surgery, the surgeons switched without telling us, they were meant to use donor skin as his was just scar tissue but for some wild unknown reason the new surgeon decided against it during surgery.

Now my son is 6 and we are waiting for him to have a camera put down as his uroflow measurements at the post surgery appt were terrible and something is blocking his urine flow.

My sons case wasn't an extreme case of hypospadias but he did have quite severe chordee which is why we went with it. I suspect they probably should have done it in two surgery's rather than the one. He was in there for hours after the initial time. Sorry it isn't positive! If I could go back in time I'd refuse to even step foot in a urologists office.

The problem is the surgery is so complex, the after care so impossible for small children and the knowledge of the general health staff if it becomes bad which it can is non existent, they won't help because they don't know.

My son had an operation to correct his Hypospadias at 18 months old. He is now 7. He has had two check ups since and will have another around puberty.
He had an incomplete foreskin and his 'hole' was underneath the Penis so he would have at best peed on his shoes or it would have effectively gone backwards. We were told he may have developed a curved penis due to the incomplete foreskin. So we chose to have the op.

It was long and he was very sore after. They have a very padded protective dressing on what the catheter is in place so car seats are not a problem. The catheter was on for a week and was then soaked off in a bath at hospital - that was tough! It was definitely a tricky few weeks but we got through it and he doesn't remember a thing.
He knows he had the op and his penis looks as if hes been circumcised so he has noticed a difference - if its mentioned he just tells the truth "i had an operation to repair it when i was a baby"
Hope that helps.

Thank you Gertrude, I came across your posts on another thread, sorry to hear you (and your poor son!) had such a difficult experience. I think this is what I'm worried about with risks of surgery, I'm not too worried about the risk of anaesthetic etc but just making a change when everything currently works feels risky in itself. I had an operation on my finger a few years ago and it's still not right (although, DH does point out that it was never a high chance of success and I didn't do the recovery physio properly).

My son had the operation, his was quite severe. All went well, he prefers to pee sitting down still.

It's such a difficult decision as there are always risks, pros and cons to weigh up.

My son is now in his 20's and isn't phased by his penis being a bit different. We've always been honest with him and discussed the operation and condition with him.