Anyone have a DS with Hyperspadia?

[wingandprayer]

I have a 10mo son with minor hyperspadia. In his case, his urethra is only about 1mm further south than it should be, but he has only a partially formed foreskin. It was obviously spotted as soon as he was born and we're seeing a urologist at the end of next month to see what they are going to do to tidy things up.

I don't know anyone else who has even heard of hyperspadia though, I couldn't find any reference to it on mn and yet I read a few months back it is becoming increasingly common. If your son had it, did they do a repair and how successful was it?

My son had a minor one (although I think a bit worse than your ds) which was successfully corrected at 14 months. Not much time to write now as am at work but if you want to know details of op etc I can write more later! It was a bit traumatic but probably more for me than him and I think it was well worth it.

There are a few other people around whose sons have had the same, hopefully they will pop up... bamboo springs to mind...

Thank god for a reply! Yes, would appreciate more details and advice please if you have a spare minute.

My son had his hypospadias repaired last week. It sounds very similar to your sons. The hole was slightly under his penis and his foreskin all bunched on top. He also had undescended testicles so had those brought down during the procedure.

He is nearly two but his surgery was delayed as he has SN.

So far the repair seems good. It was painful, he had to have a stent in for a few days which drained his bladder straight into his nappy. This caused bladder spasms which were controlled with a drug. He had three days of discomfort and suddenly he is almost back to normal.

When the stent was removed it was painful to wee for a day or two.

Now the challenge is to keep hiom still.

Hope this helps.

i know there are one or two other mums on here who have had same experience - they helped me when I was in your position last year.

Of course if I was going to search for the subject I really should have learnt how to spell it first

Glad to hear your DS on the mend Mehga. How long was he in hopsital for? Did they repair his foreskin or circumcise him? (sorry, quite personal don't have to answer - my son is going to hate me when he's 17 for how many people know about his!!!)

Don't worry w&p - I always get my hypers and hypos mixed up

DS4 has hypotonia and hypermobility but no longer has a hypospadias hooray

my son was born with this 11 years ago.he was circumsised at 21 months.it was only his foreskin that was affected.(he used to wee sideways lol) made for quite a few interesting nappy changes.
he recovered very quickly and has never had any problems.i did potty train him after his op as he refused to wear a nappy on his sore willy.
oh and he had a general for the op and it was over in under an hour. hth

I've just been reading through the other threads and was interested to hear about the number of boys who had other genital problems too. My son also had a hernia that needed fixing at 12 weeks and I wondered whether the two could be related. Stuff about it being possibly hereditary, and and the fact it could affect future babies is rather frightening too. I haven't searched the internet so far about it's something I'd barely thought about until I realised the appointment was coming up. Now I'm in two minds whether to do so. Don't want to end up panicking.

Thank FKS - that's what I want, lots of positive stories!

Just checking up to see if anyone else had found you, still no time but DON'T SEARCH THE NET!!! I did, it was a terrible mistake, lots of horror stories not bourne out by the experience of mums on mn.

Glad you've got some more replies. Will write description of op when I get home...

Right am home and ds in bed!

We had to starve ds from the night before his op but he was allowed breast milk until about 6am. Actually this was one of the worst bits as ds loves his food and he didn't go down to theatre until about 10:30, by which time he was getting very crabby. We were in a children's hospital which had a brilliant play room and a bit of outside space with toys, and a very narrow bed by each patient bed/cot with one parent allowed to stay overnight. Poor ds tried to eat the plastic fruit in the playroom...

They didn't put any needles, catethers, lines etc into him until he was under, so he went down to theatre as normal but just in his vest. One parent was allowed to go in with him when they put him under general - I went while dh waited outside. It was pretty horrible to be honest, I had taken his favourite book to try and calm him but he struggled a lot and I had to hold him down as they held the gas mask over his face. Leaving him lying on the operating table unconscious was extremely hard but the nurses were all very kind and said everyone cries, even the dads. Think the op took about 1.5-2hrs - we came back and waited on the ward after an hour or so until they took us to recovery. He went pretty much straight back onto the ward, was a bit groggy as he was coming round, ate his own weight in biscuits (take a lot of your ds's favourite snacks!) and then seemed completely recovered! His willy was hugely swollen but it looked better than I was expecting - only upsetting thing was the blood on his vest but I guess blood is pretty unavoidable during an op. He did have a line in his foot for about 24 hours, which he found pretty annoying.

He had a catether in for 2 days, so we stayed in for 2 nights. Most people seem to have had a catether which just drained into the nappy, but ds actually had a catether bag - looked a bit sad crawling round dragging the bag after him but didn't seem to bother him! The catether coming out wasn't too pleasant but very quick. First few wees were obviously painful, but again he recovered very quickly. We kept encouraging him to drink a lot to try and dilute this urine so it wouldn't sting so much. Once he'd had a wet nappy and the surgeon had checked him out, we went home.

He was on antibiotics for a week, and painkillers (ibuprofen and calpol) for a bit longer.

My tips are - take lots of food, for yourself and ds. Take a good book for when he is asleep (although the bedside tvs were free on the children's ward). Be prepared for it to be very hard work - I couldn't leave ds for a second, I had to find a playworker to take him for 5 mins if I wanted to go to the toilet (couldn't take him in with me as there had to be someone right on top of him constantly to stop him pulling his catether out) and he took a lot of entertaining in such a limited environment. Make sure you have support and someone to relieve you. Good luck!

Sorry it's so long - hope you find something helpful amongst the waffle!

Having just read your other posts, they didn't need to circumcise ds and he has quite a lot of foreskin left but I think it will depend on how much foreskin he has to begin with and what kind of repair they have to do.

Surgeon told me it is either random, in which case chance of any boy being born with hypospadias is 1 in 300, or genetic, in which case much higher odds (1 in 4?). But unless you know of someone in your family with it, you may never know which kind your ds had. If you have another son and he has hypospadias then of course very likely to be genetic, but you won't know until you have another son...

Best of luck.

L&L this is fantastic - thank you so much for taking the time to type it all! It's made me lot calmer about the whole thing now and the tips are fab.

Sounds like by the time we've seen urologist etc he will be about the same age as your DS was. Last time he had an op he was so tiny I didn't have to worry about entertaining him and him ripping stuff out - he's so active it will be tricky now. The surgeon who sorted his hernia said repair was possible, not just circumcision. I was just wondering what people's experiences were to compare the two. I want him to have a good result, but want the most pain free option too, if such a thing is possible. Out fo interest, where did you have his done? We're going to Alderhey I think.

We don't know of anyone else in our family who has one, but then my MIL was adopted, so who knows, and it's just not the sort of thing their generation talked about with their Dads is it?

Glad you are feeling calmer. I felt exactly the same as you did before the op - after our first appointment with the surgeon I left thinking "that man is going to have to rip ds out of my cold dead hands"! But it really was OK and I'm very glad we did it.

The repair/circumcision question I guess you will have to discuss with your surgeon. Circumcision is probably quicker and easier op, probably you wouldn't have to stay in. But your repair might be different to my ds's, may not need a catether etc. My ds actually had his urethra moved as well as the foreskin repair - if your ds's is only 1mm out, they may not have to do that. There really wasn't much pain for ds, first couple of wees were the worst bit but after that he was fine.

We're in Oxford so were at the John Radcliffe. No experience of the Alderhay but am sure it would be very good.

We don't know of anyone else in the family either but, as you say, it's not really something you talk about is it? I had tried not to broadcast ds's op (apart from on mn ) as I don't really think it's fair on him to be constantly talking to people about his foreskin... come to think of it probably not fair on the people I'd be talking to either!

Oh also ds was in SCBU for 7 weeks when he was born (he was prem) so a bit younger than when your ds had his op but probably fairly similar experience. Going into hospital with a 14 month old, as you said, is a very very different experience!

Yes I am wondering whether moving the urethra is really required. Given the fact that everyone's is different anyway, is 1mm really going to make a huge enough difference for him to be embarrassed in the changing room? Don't want him to be under anaesthetic for a second longer than neccessary. If he kept the foreskin may even cover up the fact I suppose!

I know what you mean about keeping it quiet. Nearly all my RL friends know - he is so not going to thank me for that when he hits puberty!!! I am trying to work out what to say to people when he has the operation. I don't really want to be discussing it with clients/work, yet will need at least a week off clearly.

Hiya, I have been reading your comments and experiences. My son is 3 and has his operation next week as his urethra is slightly wrong and his foreskin is all gathered at the front.

I was fine about the op but now I'm getting scared. They found it the moment he was born but said they wouldn't do the op until he was 3 and potty trained. I so wish they done it ages ago, he is a typical 3 year old, very active and I'm dreading it.

He is having the op at Norwich and I've been told he will be in for at least 5 days and I have to stay with him.

Also can anyone tell me how long it takes to recover? We go on holiday 6 weeks after the op, I asked the surgeon and he said it will be fine but wondered if anyone else knew?

Thanks in advance.

Hiya labm. Only just seen your message as been away, so thought I'd bump it for you and just say good luck for next week. I can only speak from experience of son's hernia at the moment and say take lots of junky magazines and some really nice treats with you, because you'll need something to distract you when he's in the theatre and you'll be sick to death of hospital food very quickly. At least if he's 3 you can explain some stuff to him about what's happening and can divert him with lots of games/books and DVDs. Our kids ward had DVD players in their rooms and play co-ordinators to help create such diversions. Ask the hospital directly what they can do to help.

Hope it all goes to plan, god bless, and I'd be interested to hear how you got on afterwards if you can