son with strange willy - any experience of hypospadias?

[treacletart]

My son was born with a mild hypospadias - basically his little hole is at the base of the glans rather than at the tip. Its not causing him any problems now but to avoid any possible future problems or embarrasment we are due to have it surgically rectified next year when he is 18m old. I have been told that hypospadias affect 1 in 150 boys (often in more severe form) but I can find surprisingly little info on the condition. I'm woried he might end up scarred (mental and or physical!) Anyone out there with any experience? -did you opt for surgery? was it succesful?

[Mummysurfer]

A friends little boy had something similar - his hole was at the side. He had corrective surgery at 18 months. 100% successful. The little boy has no memory of it nor does he have any physical scar.
Hope things turn out OK, maybe someone on here will be able to give you first hand info.

[Caterina]

a friend's little boy had the same as yours, it was a mild form, but it was 12 years ago and at the time they asked my friend to wait until he was 3 before having the op, he was then operated again at 6. It was 100% successfull but he remembers it of course, however he seems a healthy and happy teenager who plays sports and has lots of friends.

Things have now changed because they operate so much earlier so they don't remember it, so I don't think you should worry about.

[amydoll]

My friends son had it done at 18 months. He is now 7 and doing fine you can't even tell he had it done.Just make sure you feel comfortable with the Doc. it makes all the difference. GOOD LUCK

[Tissy]

The op. is quite straightforward, they usually circumcise the boy (often the foreskin is a little abnormal as well)and use some of the excess skin to create a little extra piece of tubing to add on to the urethra, which is then buried in the glans, so it comes out of the tip. It is usually necessary to insert a catheter for a few days until the tubes have joined up. The scarring will be minimal, and its not likely he'll remember. Don't worry too much!

[treacletart]

Thanks for the reassurance

our procedure involves isolating the existing opening and moving it to the tip - probably, they think, without circumcision. But he will need a catheter for about a week after.

Its just very hard to think that this wont involve some scarring - but I know you're right at 18m he probably wont remember anything about it. I guess its one of those things that's far more traumatic for the parents.

It would be great to hear from anyone whos gone through / is going to go through the same thing....

[Blu]

Treacletart: If you're anxious about the actual process of the operation, (and who isn't!) look at the 'DS goes for operation tomorrow' thread further down the Health topics list, you'll find loads of re-assurance and helpful advice.

[emmafishman]

It's so interesting to read these comments. When I gave birth to my son,8 months ago, the first thing the midwife said was "he's got hypospadia". My husband & I had never heard of it but was advised to have the op at around 10months. We checked out a fab specialist from Great Ormond Street but am obviously terrified. Especially of the dressing, catheter for 1 week and the pain he'll have. Are they in great discomfort? please let me know?

[emma26]

Our son also had mild hypospadias. he had first stage surgery in august and bounced back amazingly well - only 2 nights in hospital. he is due to have second stage done withing the next few weeks - blooming NHS cant give firm date but otherwise have been great.

doctors very forthcoming about physical side of things but i'm concerned about the mental aspects. we have to put cream on everynight, he is already very aware of what he's got that i've not etc. it is also weird to be discussing his future sex life!!!!

[Kayleigh]

My brother had hypospadias which was surgically treated when he was very young. He is now married with two kids so looks like it was all ok ! You need to be aware that it can be hereditary as my nephew had it too.

[treacletart]

Thought it might be time to revive this thread ... emma26, emmafishman - any news? We're still booked in for January surgery and I'm still dreading it It would be really useful to hear anyone else's experiences...

[maddiemo]

My son had a moderate hypospadias. He had sugery at one year.
I think if it is only a mild case I would be tempted to wait and see if he could wee ok when standing up.

My son suffered breathing problems during the op. I know this is a possibility in any op but If I could go throgh it again I think I would take the wait and see approach.

Please don't be worried by what I have said but make sure you are fully informed of any potential problems.

[eldestgirl]

I hope you pick this up treacletart, emmafishman. I've only just found this thread.

My second son had one stage surgery in June to correct an intermediate hypospadias (a snodgrass repair). His little hole was in the middle of the back of his penis. It's been 100% successful, BUT I wish I had been informed of some things in advance:

Following the operation, my son had a pressure dressing covering his lower stomach, penis and testicles (he also had a testicle brought down at the same time). He had to wear double nappies to keep this dressing clean and dry. Basically, they wear the first nappy to catch the poo and the catheter is threaded through a hole in the front of this nappy so that the outer nappy absorbs the wee. They give them a mild laxative as straining can put pressure on the repair. It also means that you can get an explosive poo which wrecks the dressing, which means taking them back to hospital to have them cleaned and redressed. This can be a painful experience.

A catheter is inserted post op to allow the newly extended urethra to heal without infection. The catheter is a foreign body to the bladder, and the body will try to eject it by sending the bladder into spasms. These spasms are very painful and anti-spasmodic medication is needed to prevent them. Unfortunately, my son seemed to need an extra dose of this per 24 hours, but I had to endure a night's screaming before I could get hold of the consultant to increase the dose. You need to get the medication down them regularly as it takes about 20 minutes to work.

He was also on the full dosage of calpol AND baby neurofen, plus an antibiotic for 2 weeks. This amounted to about 50 mls of medicine a day, which he did NOT like and when I approached him with the syringe thing, he started going ballistic. I ended up shoving the whole lot into bottles of milk at night, and putting the rest into little fromage frais pots during the day.

When the dressing came off (after a horrible poo 6 days after the op), I was quite shocked by how swollen and raw his penis looked. The doctor said it looked really good. I said, I'm glad you told me that because I think it looks dreadful! We then had to wait for him to wee, which took hours as I think he knew that it would hurt. He then screamed every time he urinated for about 2 days.
You have to observe them weeing, to make sure that there are no leaks (fistulas)and that it all comes out of the new hole.

He remained on painkillers until I put him back in his cotton nappies with fleecy liners. I then discovered that the disposable nappies had been irritating the end of his penis (as he had been circumcised, to utilise the foreskin in the repair.)Finally, I got him off the calpol and neurofen.

My son found the whole thing a painful experience and I am very glad he had it done at 11 months so he won't remember anything. He is a big tough baby, not bothered by knocks or falls, or the rough play with his big brother but he was very upset about the operation and his recuperation. I think he was very scared by the pain and reverted to frequent night wakings, insistence on bottle feeds at night, being carried around and soothed to sleep. It was worse than having a newborn.

However, his penis now looks and functions completely normally. There is a small scar on the underside, but this will fade with time. He pulls it around just like his big brother and appears completely unfazed by it all.

I am the one who feels mentally scarred! I am sure the experience is dependent on the degree of the hypospadias though. I REALLY don't want to scare you but I wish I had been better prepared for it all.

You should ask your consultant to tell you his 100% success rate, the incidence of fistulas, holes needing to be widened and complete breakdown in repairs. There are national and international statistics for comparison.

I also made the mistake of thinking I could cope with it alone. My husband had to go abroad for work and stupidly, I let him go. I left my eldest son with my parents overnight, and then endured a very unpleasant hospital stay and 2 weeks recuperation. You need someone to look after you, whilst you look after your son!

I hope this is helpful. I can try to answer any further questions you might have.

lol

[treacletart]

Thanks so much for this eldestgirl, I cant tell you how useful it is to read someone else's experience first hand.

Our DS' hypospadias is apparantly quite a mild one so I hope the after-effects may be a little easier for him, but this is exactly the kind of info I was after. If we know what to expect I know it will be much easier to deal with. I'm sure we're doing the right thing.

Did your son's sleep problems carry on for long?

We met the consultant a few weeks ago - a typically patronising & dismissive type I'm afraid - but aren't they all? - DH didnt think he was too bad. He said the succes rate was 85% and that any problems were easily rectified.. not sure how that stacks up nationally, but with our finances Its not like we have any choices really.

We're going to sort out a few more problemettes while he's under - removing a little cyst from above his eye and sorting out his tongue tie - I have a tongue tie myself and I wouldnt have bothered were it not so easy to do it at the same time. I'm hoping he'll thank me for a proper sticking out tongue!

He's all booked in for Jan 10th.

[eldestgirl]

I'm so glad you found that useful.
His sleep patterns went back to normal within a few days of him being out of the scratchy nappies and off the painkillers. It probably also coincided with the swelling going down and the stitches completely dissolving.
Our consultant was slightly lacking in baby empathy, but otherwise very nice. Patronising and dismissive is a bit much, especially when they are wielding a knife in that area.
Can't you choose your hospital and consultant, even on the NHS?
Our consultant quoted a 90% success rate with an intermediate hypospadias. If complications did arise, it was a fistula (leak) in 5-6% of cases, easily repairable with a day procedure, and in 203% of cases, a stenosis (narrowing of the the new hole), again, easily repairable. 1% of cases had to be redone from scratch. He did say that his figures were in the upper level for international stats though.
We weren't covered by the NHS or by our insurance so had to fork out for the op and no, it wasn't cheap.
I am sure you're son will have an easier time than mine as a mild hypospadias doesn't usually involve a skin graft.

Good luck on 10th January and all the best.

[eldestgirl]

That should be 2-3% of cases, not 203!

[treacletartandbrandybutter]

just thought i'd bump this - ds still booked for the 10th Jan and I'm still dreading it :(. Really helps to read other experiences

[ItllBeLonelymumThisChristmas]

Treacletart, my ds1 and ds3 have the same condition, and with about the same severity as your ds by the sounds of it. Ds1 (aged 8) has had the op and ds3 (aged 21 months) still awaits it. Please contact me if you want any specific questions answered. I am more than willing to talk it through with you. But please try not to worry about it. Ds1 had it done late (aged 5) and I can assure you that he has no mental or physical hang-ups about it, although I have to say, he had some distressing pain immediately afterwards. But as your son is so young, he may not suffer like my son did. I can explain more if you want to talk about it.

[treacletartandbrandybutter]

thankyou LM much appreciated - may well contact you nearer the time if thats ok :)

[eldestgirl]

Treacletart,
Sorry to ask so late, but have been inundated with grandparents since Christmas. How did the op go in January? Hope it all went well.
DS2 doesn't even have a scar now.

[treacletart]

Thanks so much for asking eldestgirl - actually he didnt have it in January after all - He was so smothered in cold on the day that they had to postpone it - getting it rearranged was a bit of a nightmare but its now at the end of April (he'll be 22m). The preop assessment, and seeing the dressing they'll use did reasure me a bit I think. I'll keep you posted.

[JillMLD]

Hi there,
My son (now 22 months) has mild hypospadias. Like someone fi=urther down this list practially the first thing they said when he was born was "oh he's got hypospadias" and like others I am amazed at how prevalent its supposed to be yet know very few people who have heard of it. We met with a consultant when our boy was about 4 months old, he said it looked like a mild case and when pressed said if it was his son he wouldn;t bother having surgery (I was gobsmacked I thought all docs would say if you can have surgery, then do have it). We were advised to reassess at about 2 years. So far its still looking mild, when he wees on the abthroom carpet (nice) accidentally at bath time it goes vertical so hopefully it is physically not a probem. I am however worried for him when he is older that he'll get teased because his penis looks odd. The foreskin is sort of half missing and looks like he's been circumcised apparently. Is this typical in hypospadias cases ? None of the health professioonals seemed open to talking about the phsycological implications of surgery vs non surgery.

Will be very interested to hear how you get on with your son's op. I wish you and him well for April.

Jillx

[treacletart]

Well, we finally went in for surgery last Weds. Having been cancelled once,becuase of a cold and a second time, because of building work at the hospital they wanted to cancel us a third time, but I found the stress of having it hanging over us unbarable and caused a huge fuss. They then somehow managed to find a space for him - proves kicking up a fuss can work though.

Ds is 22m now. The operation (a "snodgrass" repair) went smoothly but he got unusually bad spasms from the catheter. Although between spasms he seemed fine in himself, the cramps were obviously agonising for him and we stayed in hospital longer than we anticipated so we could manage his pain more efficicently. He also had to stay off his feet because standing seemed to make the pain worse and we had to try to keep his bladder as full as possible too. His willy was really well bandaged but i dont think as sore for him as Id expected at all. He had a dermatoid cyst removed from near his eyebrow at the same time. - that may have bothered him more.

The hospital staff were great and they pushed two beds together for us to make it easier for me to stay with him. But at my lowest point, desperately trying to get him to drink something after 2 hours of near constant cramps, I would definitely have said it wasn't worth it.

Once the catheter was taken out he was almost back to his old self. What I can see of his willy looks completely "normal" in that they've fixed his foreskin which, like your ds' JillMLD, was sort of loose before and only half covered his glans.

When he wees, he tells me its "bit hot" but it seems uncomfortable rather than painful for him.

The hardest news is that he has been left with a small leak "fistula". I have to see the consultant again in 6 weeks but we will need to go through another operation in 6 months to repair the fistula. I dont know the details of the repair but I'm just praying it will be simple to fix and wont necessitate them redoing everything they've already done - but he will need another catheter - the consultant said he would use a superpubic catheter (through his tummy) rather than one through his willy, because that would minimse the spasms. Hopefully it wouldn't need to be in for so long next time either.

We now have no option but to go ahead with further surgery because we can't leave him with a leak. But I'm hoping we will be better prepared next time and that it wont be as bad.

So there we are - I think its been worth it, he seems totally unscathed by the experience, but I underestimated how stressful it would be on DH and I, not just during but his hospital stay but while it was (is) hanging over us too.

[mumwithbumandtum]

Hi there. I have been following this thread carefully as DS1 has severe hypospadias and had his first op last Thursday. I found Eldest Girls' comments particularly helpful, thank you. He recovered well from surgery and we were quite amazed that he got his appetite back and was smiling within a few hours of surgery (a mammoth 3.5 hours long). Tomorrow we're going back into hospital and he has to go under general again to have the stent / catheters removed (one through the willy and a superpubic one as well) and the dressing taken off. I'm a bit worried as it's starting to smell a bit foosty despite our attempts to keep it as clean as possible. Poor DS1 hasn't had a bath since the op so perhaps that's not helping the general foostiness. I'm DREADING seeing the area once the dressing is removed. I have no idea what to expect other than it is going to 'shock us' (consultant surgeons' words). I'm looking forward to it though as DS1 tries tugging the catheters during nappy changes which scares me. All things being equal, he'll have a second and final op in 6 months time (he'll be 22 months then) and we can put it all behind us. DS2 was born 3 weeks ago and thankfully is 100% willy-tastic, so that's been a relief too. Although, coping with surgery and a newborn baby has put my patience and logistical skills to the max.

[gordonpym]

So, MumwithB, how did it go?

[veryconfusedandupset]

My husband has this condition,and our youngest son, so I presume it is hereditary. DH just has hole in side rather than end and no real foreskin, DS2 much the same. No treatment was ever suggested for either and I can't really see why it would be, everything works perfectly well like this - thy just look a little bit different. They way it can make conception difficult for partners but I really can't see why as semen ends up in much the same place, and I managed to conceive quickly with both DS and had 2 MC.