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Original poster

Boys with hypospadias

42 replies

minimuffin · 04/04/2007 20:06

I've checked previous threads on this and there are only a couple of fairly old ones although they're really useful.

My ds is 15 months old and has "fairly severe" (in the words of our consultant) hypospadias. We've been told it'll take at least 2 or 3 ops to correct. Have managed to put the issue on the back burner more or less since he was born, and not fret about it, but feel like it's time to start addressing it now.

Was wondering if anyone else has a son with this condition and wanted to talk about it. There is so little info about it - consultant told us not to bother reading what there is on the net as he said it makes it all sound far worse than it is and is fairly upbeat that he can sort ds out so that he will look and feel completely normal.

We've been advised to wait until he is 3 before the first op. I'm interested to know from parents who've been through the ops what age your boys were and how it affected them. Am worried that at 3 mine will be old enough to know he is different and (given that ops only start at 3 and he will need at least a couple more) he is obviously going to remember all this. Any advice on dealing with this? The consultant said it will only become an issue when he toilet trains because he won't be able to wee standing up as he is at the moment.... When do boys normally start to wee standing up? Have you been given any idea about what may have caused it? I know it's hereditary but neither DH or I have anyone in the family with it (that we know of, not really something you bring up at family reunions is it?!!)

Also, any recommendations for consultants? Not sure what the etiquette is on here for discussing health professionals. We are in London and I like the consultant we're under well enough, but want to get a 2nd opinion on the age issue, and not sure where to start looking. Probably Gt Ormond St?

Would love to hear from anyone in the same boat!

OP posts:
99redballoons · 04/04/2007 20:15

Hi minimuffin, I'm afriad I have no advice or stories to give, but about the weeing standing up my ds is almost 4 and I still insist he sits down which he is happy about. I think it's only once they start school that they themselves might become conscious (sp?) of it iykwim. I hope all goes well for your ds.

foxybrown · 04/04/2007 20:16

Hi minimuffin,

I'm sorry to hear that. My 5 yo has it. He had his first op at 2, second at 3.5 and one earlier this year. I'm happy to talk about it. You are right, there's very little information to be found anywhere.

Its something I find very hard to make decisions on now he's older. He's recovered remarkably well from the ops and handled them brilliantly. Where are you based? We are in London.

ummitsabitembaressing · 04/04/2007 20:18

sorry don't mean to be ignorant but is this to do with the repositioning of the uretha?

btw ignore my name change its for something else!!

ummitsabitembaressing · 04/04/2007 20:20

and if it is my friends ds has this condition and has had two ops, he is four and currently having issues regarding continence so if you have any info regarding this then that would be great.

foxybrown · 04/04/2007 20:21

yes, in my sons case it is half way down the underside of his penis rather than at the tip.

The surgeon made a small tube from the uretha to the tip and wrapped the foreskin round to cover the repair. He pee's standing up. The only problem remaining is that the foreskin has small holes where it was stitched up. They've attempted to repair this twice but the holes are still there. They want to circumsize but I'm not so keen.

ummitsabitembaressing · 04/04/2007 20:22

right my friends ds has his foreskin covering up the holes so effectively has been circumsized but they used the foreskin elsewhere.

ummitsabitembaressing · 04/04/2007 20:24

sorry must make myself more clear his foreskin is used to cover up the hole from his original uretha. He wees standing up but as i said is constantly weeing himself which is causing her a lot of concern as he starts school in sept.

Original poster
minimuffin · 04/04/2007 20:25

Oooh wasn't expecting replies so quickly. Thank you. Yes, it's to do with repositioning and extending the urethra, and a bit of reconstruction in my ds's case as well.

Foxybrown - we're in SW London so we're under a consultant from St George's at the mo. Has your son finished his surgery or is there more to go? It's v v good to hear that he handled his ops well. Was each one successful (i.e. there was no correction of previous surgery). How did you handle them?

OP posts:
HopeIGetSomeMegaEggs · 04/04/2007 20:27

My DS4 has a hypospadias, fortunately it's not too severe and the specialist hopes it can be corrected with just one op as the opening is just slightly to one side and his foreskin is all at the front. He also has undescended testicles and these will be corrected at the same time.

He will be 2 in June but was due to have the surgery last Sept. Sadly he has SN and the anaesthetist wasn't happy to anaethatise him until we knew more about his condition.

Original poster
minimuffin · 04/04/2007 20:33

Thanks for that, I'm glad it's not severe and it does seem to be something which can be corrected completely.

My ds also has something called a shawl scrotum, although apparently this has improved since birth, and his testicles sit at either side of his willy rather than underneath so this might need correcting too. It seems quite common that boys have other little genital abnormalities along with hypospadias. I wish I knew what caused it. I have read that it's on the increase as well.

Excuse my ignorance but what is SN?

OP posts:
foxybrown · 04/04/2007 20:50

I'm SW too, but he was born at Kings so that is where his ops have been. They have been very good, but I do suspect that different consultants do things differently. Mine seems quite keen to lose the foreskin, whereas I think it might be useful to hang on to it.

The first time he had a catherter (sp) and a 3 day stay in hospital. Second and third were day surgery. I can't tell you how proud I am of the way he coped. I, of course, found it hideous and fell apart as soon as he was under anethestic!

foxybrown · 04/04/2007 20:54

where is your boys uretha? do they think its a fairly simple op in his case?

HopeIGetSomeMegaEggs · 04/04/2007 20:57

SN is Special Needs MiniM - my DS has a developmental delay and low muscle tone.

My eldest is 7 and he had an op to bring down his undescended testicles in Oct. DS2 had retractile testicles which have now come down and DS3 has had a splendid pair since the day he was born.

I've also read about the increase in hypospadias,now one of the most common congenital birth defects. Strange that 3 out of my 4 boys have had some sort of goolie prob.

foxybrown · 04/04/2007 20:58

have you read anything about why it might be increasing? I feel rotten about all the things I couldn't make properly it had to be his penis!

HopeIGetSomeMegaEggs · 04/04/2007 21:00

One theory is the increased oestrogens present in the enviornment, water suppliy etc. Also in food packaging. I'm a bit vague but will see if I can find a link.

Original poster
minimuffin · 04/04/2007 21:02

Mine's is a little unusual in that his urethra is at the end, but his willy is curved. So if it was straightened, the opening would be somewhere towards the back. So it needs straightening and then the urethra extending so that it reaches the new end. I'm not clear yet whether that will involve circumcision, but haven't really worried too much about that because my dad and brother are both circumcised so it's normal to me. (Husband on the other hand winces at the prospect!).

Who is your consultant? We are covered by medical insurance so I think we can see anyone we want on a private basis. Do you think you started your son's surgery at a good age? How was he about the later ones (when he must have had some idea about what was going on)? It's amazing that he handled it well - I am sure that I am going to be a sobbing wreck as well the minute he goes to theatre... I just wish he didn't have to go through this.

OP posts:
HopeIGetSomeMegaEggs · 04/04/2007 21:05

Actually if you google Hypospadia environmental causes you get lots of hits.

HopeIGetSomeMegaEggs · 04/04/2007 21:06

mm - my DS's is a little like that - his willy curves over to the front and his urethra open slightly to one side of the tip.

HopeIGetSomeMegaEggs · 04/04/2007 21:09

Have just read on the wikipedia entry about Hypospadias the having flu in early pg has a weak associationm with hypospadias - I was really poorly when 8 weeks pg with DS4 - I've always wondered if that was why he had SN.

Original poster
minimuffin · 04/04/2007 21:12

Oh god that sounds ominous. I'll try it in a minute. You can't help but wonder if it was anything you did/ate/took. I took hayfever medication twice (pharmacist gave me it - I was never totally sure about it so I didn't take more), paracetamol a couple of times around week 12, and I didn't cut out alcohol altogether. Think I will for next pregnancy as it's just not worth the guilt. But funnily enough I was really careful about what I put on my skin, even stopped using an anti-perspirant for a while and used a herbal thing... I've now switched to toiletries and cleaning stuff which is as chemical free as poss as I read one article about links with stuff in our environment.

Have either of you got any family history of it? I'm slightly worried on the other threads that a couple of people have more than one son with it. Consultant said there is a 12% chance if we have another boy that he will have it too. Were you told anything like this? Also was it picked up on your scans? We didn't want to find out the sex so even if they did spot anything I suppose they can't say. Hmmm

Right, off to google and scare myself silly...

OP posts:
Original poster
minimuffin · 04/04/2007 21:15

Gosh eggs I'm really sorry to hear about your son - no-one deserves any problems, let alone several. I guess it makes your job of explaining what is happening more difficult as well - I should count my blessings!

OP posts:
DumbledoresGirl · 04/04/2007 21:17

Minimuffin, I have 2 sons who were born with hypospadias. They have both had only moderate severity but it is all very much fresh in my minds as my youngest only had his op last Monday and is still very much in the healing stage. If you want to email me I am

[email protected]

foxybrown · 04/04/2007 21:35

We are under Mr Davenport at King's. He's lovely!

I had heard stress in pregnancy could have been a factor, and my early pregnancy was very stressful. At the end of the day, we'll never know I don't suppose. But hey, we're mothers so we can always find something to beat ourselves up about!!

Its definately generally harder for DS, but that's the hospital experience as a whole. I tried to make it as worthwhile as possible for him!

We need to see if he pee's OK with his foreskin retracted, or if he pees straight because of his foresking helping the direction. Getting him to do that is really hard. He is quite sensitive about his willy and doesn't mess about with it much compared to his brother. Whether or not this is because of the condition and the operations I don't know.

treacletart · 04/04/2007 21:51

Our ds had a mild hypospadias and I started a couple of threads about it a couple of years ago here and here . By coincidence we're off to the hospital tomorrow to see the consulatant for our annual check up. As far as I can see, his willy looks and functions perfectly normally now. He recovered and healed remarkably quickly after his second op and we have had no problems. The first was horrid because of his reaction to the catheter, but the second was like going for a haircut in comparison. TBH I'm sure having the ops when he was relatively young helped tremendously in how he dealt with it, but I guess there may be important physical reasons why your consultant wants to wait if your ds's hypospadias is more severe. Good luck, I know how horrible it is having this hanging over you.

Original poster
minimuffin · 04/04/2007 22:49

Thanks so much for sharing your stories. It is something that just hangs over you isn't it? I managed not to think about it much to begin with but since he turned one and is becoming so much more his own person, I look at him sometimes and feel terrible that I know what's coming to him and he doesn't. Still, there's no way we can do nothing about it.

This has made me decide that I need to crack on with getting a second opinion because he's a sensitive little soul and I would love to get as much of it out of the way as possible before he realises he is "different". However if there's a medical reason not to do this then we'll just have to deal with that too. Thanks for the name of your consultant foxybrown - why did you say you find it harder to make decisions about your son now that he's older? Is it because you feel you ought to involve him in it more, or because you know he's so much more aware of what's happening?

I noticed from reading one thing on google that Australia seems to have a v high rate of hypospadias so I might do some amateur sleuthing. Probably a complete waste of time but hey...!

OP posts:
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