Hypospadias

[Maraudingmarauders]

Hello,
I'm projecting a bit as I'm only 22 weeks pregnant, but we have a family history of hypospadias, with my brother and second cousin both being affected. Both received treatment shortly after birth, and my brother a follow up operation around age 1.
My midwife didn't even recognise the term so I know it isnt hugely common but now I've found out I'm having a boy I'm trying to prepare myself in case of the eventuality. Qe don't know much about the genetics - it's obviously from my dad's side though he isn't affected and nor is my 2nd cousins dad. Older generations don't tend to speak about stuff like that, at least in our family, so no idea about them.

If anyone has experience of this, would you mind giving some information about how things were dealt with in hospital- was it diagnosed straight away, how soon was surgery if required etc? I realise as it involves genitalia a certain amount of discretion is required so please only share what you are comfortable with.

Both my brother and cousin were over 30years ago so whilst my mum has shared some details she's a)conscious of my brother's privacy b)not necessarily relevant to modern medicine.

Thank you.

Hi.
My DS had this.
They spotted it as soon as they did the newborn check either that day or the next.
His was quite severe and he had 2 operations.
The first was at about 18 months (it was a long time ago, so can't remember exactly!) when they removed the foreskin and grafted it on to the underside of his penis. He was fine- had to avoid ride on toys for a bit, but no issues at all.
His next op was when he was just over 2 (I remember that as I was 8 months pregnant!!) where they reconstructed the graft to rebuild the urethra.
Again it all went all well thankfully!
He had quite a few check ups, then was discharged and had to go back once he'd gone through puberty to double check everything.
DS's was quite severe, but I have 2 friends whose sons had it very mildly, which were both sorted as just day cases.
Let me know if you want me to let you know any more.

@RosieBdy thanks for responding, it means a lot. Apparently it is more common than I thought, Google suggests 1 in 300 boys affected. It's really good to know the surgery didn't have too much of a lasting impact. You dont have to answer if you don't want to, but do you think your son has any psychological impact from it(either the condition or the surgery)? I'm not close enough to my brother to enquire.
And was it completely out of the blue for you or did you have it in the family?

Hi,

nothing in the family for us and nothing in the family for my 2 friends' sons either...

Psychologically, he's fine I think.

It was a really good repair- it just looks like he had a circumcision really and his was very severe.

I don't think he thinks about it at all
now. We did keep occasionally talking about it when he was younger as we knew he had to go back as a teenager and I just wanted it to be normal for him, rather than a sudden shock when we went back to the consultant.

Possibly he was a bit later being toilet trained consistently but that might just have been him and nothing to do with the op!

I don't think people talk about it much, but once I'd mentioned it to my friends, they were so relieved to be able to talk about it for their boys too. As you say, it's fairly common but it’s important to know that there’s a big variation in severity.

I hope everything goes smoothly for you for the rest of your pregnancy and that your worrying is for nothing.

I can honestly say that although at the time it was a shock and we were so worried, our DS is really fine.

@RosieBdy I'm so pleased to hear that. You sound like a wonderful family. Thank you.for taking the time to talk about it, it's really helpful. I'm going to try and put it in the "can't do anything about it" pile and see how things turn out. I just like to be prepared. I can imagine having it out must have been very stressful so I'm pleased everything has turned out well for you all xx