Hypospadias

[goingfortwo]

I was just wondering about other parents experience of Hypospadias in their little boys? DS is 3 months old and was born with Hypospadias (urethra opening not at the tip of the penis) he is being seen by the consultant next month to see how far down the actual opening is, he also only has half a foreskin and has developed a cyst, have other parents experienced this and what was done to fix it? we are not sure if his is just cosmetic at the moment or if its going to be an actual problem when he gets older, we understand if it needs fixing then its a pretty major surgery I was just wondering how other parents coped and how it has affected their child. sorry for the long winded question but google searching is driving me insane

[puddleduckmummy]

My son had this, hypospadias and incomplete foreskin. He had the operation done when he was around 9 months old and we went for the circumcision as we felt trying to repair the foreskin held too many problems and may still lead to needing circumcision when he was older so it was better to do it all now. He was absolutely fine, recovered really well and is now 5 and has no problems at all! I'd forgotten about it til I read your OP.

[FootballFlorence]

My son was born with this. He had surgery at 18m and it was very straightforward and recovery was incredibly quick. I think the worst aspect was being nil by mouth beforehand when the op was in the afternoon as he was always hungry. Also his penis was very swollen for quite a while, a few weeks, but that's normal and it didn't bother him. He's now 22 with a long term girlfriend and he tells me he has no problems in the bedroom department!

[PonderLand]

I've just been searching and came across this recent thread. My son had the surgery last week and I'm afraid to say it hasn't been straight forward. I would expect the urologist to give you an honest opinion on wether your son needs surgery to correct the hypospadias. Some questions I found useful to ask myself in making my decision...

Will he look very different to other boys? Will it make him self conscious? Could it affect his fertility (if the urethra opening is very low down the shaft they can not get someone pregnant), could it affect his sex life? Chordee can cause men to experience pain during sexual intercourse.

My son has/had hypospadias, chordee, penile torsion and incomplete foreskin. We can add infection and wound dehiscence to that list. My son has been in pain with constipation, stent blockages, extreme swelling, testicles and thighs black from bruising, pain weeing with blood while the stent was on, pain weeing when the stent is off, he couldn't sit down for the first week whilst the bandage was on, two weeks on and he bursts into tears when ever we take his nappies off as he is expecting pain. He was climbing the walls (post op) in hospital for two hours in utter pain until they prescribed him something stronger than calpol. We've spent 16 hours (in one week) waiting around for urologists in various depts while they try and fail to make time for him. Another day today was spent waiting for the urologist who never told us he couldn't see him until 3 hours later. He's had high and low fevers, discharge, very fishy smell and diarrhoea. We saw 5 urologists whilst waiting for them to agree it was infected, in the end I went to my GP who confirmed it and sent us back to the god awful urology dept as she wasn't confident in treating it. Now I'm waiting for the specialist urologist to find the time to have a look at the wound and tell me what on earth has gone wrong.

I strongly recommend asking your surgeon about the amount of hypospadias surgeries they have performed and the amount of complications (what were the complications & what was the degree of hypospadias that those patents had) resulting from surgery.

I'm sorry for telling you a story which isn't one of the 'You'd never know they'd had surgery' cases, but it is a corrective surgery that has a very high chance of complications, which can lead to a lot of pain. Sorry for been negative, our experience is not common but I thought ours would be straight forward and I feel cheated and guilty that my son is suffering more than he ever would of done growing up with hypospadias.

[gonefortwo]

Thank you for the replies and thank you Ponderland for telling me your son's experience after all the research I have done, and looking at very old threads there hasn't been a 'it went wrong' so thank you now we can seriously evaluate all the options, can I ask how old is your son? mine is 4 months at the moment so we know it won't get fixed for a while, he also appears to have 2 urethra openings one at the base of the shaft and another just below on his penis, he currently suffers with cysts which are making him uncomfortable, can I ask which hospital performed the surgery obviously if you don't want to say then please don't feel you have too, im sure our local hospital doesn't perform the surgery so he may have to go a different hospital for the surgery

[PonderLand]

We saw two urologists today who did the surgery on our son, finally we got someone that knows something. Many urologists do not do hypospadias surgery as the risk of complications is very high.

We can add to my sons lists of complications a failed skin flap which is covering his urethra, that is probably what got infected and smelt bad as it's dead tissue which will fall off and scar. We are going back in one month for them to see the damage once the skin has fallen off, it is covering his old urethra so I imagine he'll be weeing out of two holes. If my son needs further surgery we are going to have to find the money and go private, try and find a surgeon that is very good or ask to be referred to a hospital with a very good surgeon. My partner said today that we know more about our kitchen builder and his experience than we do about the surgeon. Bit worrying!

He's 22 months old, we had the first consultation at about 7 months old. The consultation was done by a good urologist who had performed the same surgery on my twin cousins with good results 16 years ago, unfortunately he told us he'd be retiring. We never met the new surgeon until the day of the op.

Your sons hypospadias sounds quite severe and I would think it will require surgery, they may need to do two operations. My sons lasted 3 hours. I think what I've realised is that one complication leads to another.. it either goes perfectly without any issue or it's disaster after disaster. The surgery can go wrong and we were aware of that chance we signed the consent form, what I wasn't aware of was the complete lack of after care, they don't have a consultation clinic to go to. We get told by the urologist 'wait for me in a&e' then 8 hours later a different one turns up who has no idea about the surgery or my son. Or they don't turn up at all. It's so unprofessional and dangerous, they don't have the time to help it's a basic service.

Usually once the operation is done you have a follow up appt after about 6m with the surgeon and that's it, they keep the involvement to a minimum to stop the children from feeling insecure about their bodies or that something is 'wrong' with them.

What is frustrating is that you never know what is a normal, you get a leaflet saying look out for 'discharge, uncontrollable pain, fever' etc but you never get shown a photo of what a normal healing repair looks like or an infected one so you are at the mercy of the urology staff if you suspect something is wrong.

I will private message you the hospital that we used. I really hope that your experience is much better than ours, and I am sure it will be. The surgeon will tell you the risks involved and may even tell you %'s. It's a difficult choice to make as our children seem so happy and apart from weeing in the wrong place it all works perfectly well, to put them through surgery is hard but it is necessary in most cases to prevent issues arising in adulthood.

[uhoh2016]

My son is 8 he had the hyperspadias repair when he was 12mo at alder hey. I wouldn't say it was major surgery tho he was home the same day. Of course you don't need to have the surgery but it will impact him in later life as in he won't be able to pee standing up as it comes out from underneath and in a wide burst rather than a straight stream like most males do. If you choose not to do the surgery it will not impact his ability to have children in later life but I imagine loose open foreskin may cause him issues may hurt during sex etc. U could opt for him to be circumcised but imo if he's going to be operated on for a circumcision may as well get the hyperspadias repair done.
It's usually operated on when they're young as they're generally unaware of it at this stage and will forget it ever happened.
Yes it's stressful for you those couple hours they're in surgery and the double nappying afterwards is awkward and messy but your son will not remember this going forward.

[oliviafraya1]

My son is having his Hypospadias repair tomorrow but I can’t help but feel incredible sick.

When he was born and told he would need surgery they made out it would be very straight forward and there was no mention of a stent.

We had our pre op last week and feel so incredibly worried. We wasn’t aware of the severity of the op and after care. We also never realised he would need a stent. My boy will be 2 on Thursday (op is day before his birthday :( any helpful advice or tips would be really appreciated.

Thank you

[PonderLand]

@oliviafraya1 hi Olivia, how did the op go? I hope it's all gone smoothly for your son and you!

My son is now on a waiting list for a re-do. We had the pre op assesment last week, I'm very very nervous for him and I can't help but wonder if I'm making the right decision again. The waiting list is 10 months so we have time to decide.

[oliviafraya1]

Hi @PonderLand, thank you for your reply...

Yeah the operation went as well as could have been expected. My son had the snodgrass distal tube repair and had a stent for 1 week...

He’s recovering exceptionally well and seemed to bounce straight back. Nappy changes and medication time were difficult as we used the double nappy approach. Me and my husband almost had to wrestle him to get him to have his meds bless him but thankfully no infection.

He had his stent removed last Wednesday and has coped really well, I think the itching is what’s causing him most distress as he still has some stitches which haven’t dissolved.

He will be going back in 3 months to see if the repair was successful and whether he will need further surgery.. fingers crossed.

Do you know which type of repair your little one will need? I felt we wasn’t informed properly about what was involved until the pre op.

Here to support if I can x

[PonderLand]

I'm glad it all went well for your son. How was he for the dressings removal? Did they ask you to take him in for a bath? My son refused to sit down in it so it wasn't soaked as well as I'd of liked 3 of us had to hold him down! I'm thinking of asking them to give him some meds to make him drowsy next time.
Yes the medication is so difficult. We could definitely see the difference when it started to wear off though so it's 100% worth the trauma of getting it in them.

My son had his repair at 18 months we're on the waiting list for it to be re-done due to complications, they did fix the chordee last time so it wasn't a complete waste!
He'll be just gone 3 when he has it. They're going to use donor tissue for the repair as the skin flap died last time and went necrotic, they just called it a urethroplasty re-do with d-cell tissue. I know what you mean about them not telling you the whole story. I'm thinking of getting a private consultation and have them explain the surgery that is been proposed, the surgeon we see now likes to sugar coat things and give random made up statistics. He told me the next surgery has a 95% success rate... I've tried finding info on it but apart from research papers I've found nothing so where he's pulled that figure from I've no idea.

[oliviafraya1]

@PonderLand thank you, yeah he’s doing really well thank you, just hoping he doesn’t need further surgery.

We were quite lucky really as he only had a small dressing and 1 stitch holding the stent in and most of the dressing had come away so it wasn’t too bad getting it off.

He didn’t have to stay for a bath, they just advised us to give him a bath daily which we have done.

Bless you it sounds like you’ve had a really tough time. I definitely think there isn’t enough awareness about Hypospadias as we had no idea the severity, the bladder spasms, the morphine etc.

I think getting an opinion off a private surgeon is a good idea. Our surgeon played the surgery down and it wasn’t until the pre op that we realised the severity and risks etc.

I really hope your little one gets sorted out, the only saving grace is they won’t (or shouldn’t) remember when they are older.

Where abouts do you live if you don’t mind me asking? Our operation was in Cambridge

[PonderLand]

@oliviafraya1 ah, it's so different everywhere. In America they seem to advise daily baths too until the stent can be removed. It sounds like a better way so I'm going to do that next time. We were told to keep the area dry and then go in for a 1 hour bath after a week and dressings removal. It wasn't soaked enough for the removal and the dressings nurse ripped one of the stitches which couldn't of helped the healing. He got an infection and flap necrosis, the infection seemed obvious as soon as they took the dressings off but a urologist came by to look and he sent us on our way. It really stunk of fish/infection but they said it was just urine

I think there should be more awareness of hypospadias too, and more information out there that is easily accessible to everyone who requires it. The leaflets they hand out are a complete joke!

It's a really difficult thing to do, to accept that surgery is the right thing to do and then put your trust in the urologist. They should be explaining surgery methods/complications more when you first meet the urologists. We should receive an in depth leaflet on what it should look like post op. 1 week/1 month etc, more information on complications and what they can appear as. I did end up finding some post op photos on parc urology website which is dr snodgrass's clinic. We live in Leeds and had the op at Leeds children's hospital. Where was your sons done?

[oliviafraya1]

@PonderLand oh really, I didn’t know that. I’ve done loads of research though since before and after the operation.

Sorry I meant to say my little one wasn’t allowed a bath for 7 days after the operation, until his stent was out and then they advised daily baths.

Bless your little one, sounds like he’s had a really tough time. I completely agree it’s such a huge decision to make regarding your little ones future. I can remember thinking I didn’t want Jax to have it done. Couldn’t bear putting him through it but it wasn’t as bad as expected (thankfully)

Yeah the leaflets are a joke and I definitely think they should include pictures of what to expect and about the itching and healing process etc. We were told by one doctor no straddling or slides or anything for 6 months and the other told us 2 months..

I am unsure on the success rate but just hope and pray Jax won’t have to have further surgery... same for your little one.

Jaxsons surgery was done at addenbrooks in Cambridge x