My son had his second stage Hypospadias repair on Feb 4th...looking for other people's experiences.

Amanda - posted on 04/25/2013

My son has also went through 6 surgeries starting at 9 months until he was 5. Starting wit pulling the access skin under to the whole in the wrong place. including his testicles. Everything went well and still looks good, but his birdie points down. Which worries me that it won't come up to where it's suppose to be. But the Dr's told me that the only thing they can figure out is that when I was prego it was most likely with twins and the one egg over powered the other. Just keeping my fingers crossed that everything straightens up with him and he can live a normal life.

Hope - posted on 12/12/2012

i am so afraid that my son will have more surgeries and that make me thinking that in his future will not be welling to have a relationship with a women!!:(

Nicki - posted on 12/10/2012

my son has had 12 surgerys . He develops keyloids very easy & when they stitch him up, they even develop from the inside. he goes wed ( dec 12th) for medical clearance & on dec 14th he is having his 13th procedure done. they say it "should" be his last. I can sympathize with everyone going through this.

Hope - posted on 12/10/2012

hi everyone

i can feel every mom here with a child has hypospadias . it is really hard to see your baby go through this. i has a 8 years old was born with a mild hypospadias . his first surgery was when he was 6 months and then 4 more during his life . and now just yesterday i was giving him a bath just noticed that he have a bulge under his penis .it scared me to death. i don't want to go through another surgery again. poor kid. he now can understand and feel so bad and scared about it. i called his doctor office and they gave me an appointment next month jan 9th. i hope it is nothing big . please if someone has same case let me know. i need to know what kind of procedure they have done to their kids. thanks . God Bless you all.

Brooke - posted on 12/05/2012

Hi I was reading your post and we don't have the exact same problem but simlar recovery seems like... My son turned 2 the first of October and he was digianosed with hypospadias. I had noticed while trying to potty train he was peeing backward and forward. I was very concerned but everyone told he including his doctor he would grow out of it. It was not getting any better at all so around the first of November I took him to his family doctor for his due well baby check up and had the doctor look at him and thats when "hypospadias" was said he had. Then we were referred 2 hours away which I didnt mind the drive I was just terrified. So today we go to our specialist apppointment to find out it is way worse. He was misdiagnosed and he actually has 2 pee hole and pees out of both. They scheduled his surgery for after the first of the year and I am scared to death! The specialist was like this should have been detected a long time ago because apparently he was born with it. So i am so angry with our family doctor because it is a extremelly painful and bad surgery! HeLP does anyone have any suggestions or storys similar?

Aa - posted on 11/24/2012

Hi my son have same problem right now.i am trying to rich his dr but because off thank's giving I have to wait for long can you tell me that what they did with your son and dose that got fix? I will be waiting for your ans thank you.

Shanah - posted on 08/02/2012

Just found out my son will need his fistula repaired in about 6 months. :( Im so sad & upset that this has happened but I just have to stay strong for my son!!!!

Shanah - posted on 08/01/2012

Hi, Its nice to find someone who is/has gone through the same situation I am facing with my son. since this was posted a while ago I would love to hear how everything is going, now with you're son. My son was also born with severe hypospadias and chordee. He had his first surgery when he was 11 months old on February, 1st 2011 he had the skin graph and the straightening of the penis. On July 18th 2012 He had his second surgery he had the urethra built and they covered the original hole. He was potty training prior to surgery so its taken us 2 weeks to get him to want to potty on his toilet again... so today I was watching him pee and I noticed him peeing from the tip "new hole" and also it seemed like pee was coming from the original hole so I watch him a few more times today and still saw the same thing so I laid him down and looked underneath his penis where the original hole "was" and I was shocked to see a hole... almost the size of a pencil eraser not quite. I don't know for sure if pee is coming out of this hole but it looks like it. I am calling the doctors office early in the morning.. I am afraid he is going to need a 3rd surgery... he's already been through so much it breaks my heart!

Michelle - posted on 06/10/2012

My son just had a hypospadis fistula repair done and it hurts him terribly to pee still 4 days later (he doesn't have a catheter). He is potty trained but bc it hurts so bad to pee he asks for a diaper so he can hold it until it literally comes out bc he can't hold it anymore. Anyone else go through this kind of surgery? Did it hurt so bad for him to pee and if so, how long did this last?

Nicola - posted on 07/26/2011

my son has just has his 2nd stage repair and ster the 1ststage looks atlot better. we are hoping this is the last op but may need more as he grows. 2nd time around at 2.5years he done really well! taking him down was harder this time, but the results seem better! hopefully thie will be his last op and all will heal !

Jennifer - posted on 07/20/2011

my son is going for his 2nd repair on aug 3 2011.. the first time they said they moved it to the tip and he was fine once he wa potty tained me and my boy friend notice he wouldnt stand and go pee now he pee ut of both whole... does this sound bad his doc said he will wait see how bad it is.i live in california so he is having it done at children hospital so i know he is in good hands

Tan - posted on 05/05/2011

hi ladys need some advise my son was born with a hyposadious and had a operation to correct this all was very succsefull this was in may last year resently noticed what i thought were black head on the scar tissue took him to the doctors were she told me that it was the stiches coming out a few weeks on and today he woke up and went to the loo screaming i ran in asked what was wrong and told me it was his winky was sore and that he wet the bed as i was cleaning him up i just so happened to have a good look at his winky and noticed what looked like the old hole had re opened went to the docs and she said to keep an eye out to see if he was leeking so everytime he went to the loo i watched his stream of wee and noticed that he was dripping from old hole went back to the doctors and she is going to fax a letter over to his surgon i am so upset my poor baby boy he will be 3 in september and worried about him having the operation again as he will be old anoth to understand anyone else had the same thing happen thanks xx

Tina - posted on 04/09/2011

Hi Everyone, my name is tina and I my first little boy was born with the exact same thing it is so nice to see that we as a family are not alone with this. My son Tiaghe was born three weeks early and like that we were informed we had a little girl who we called aleesha. We knew ourselves something was not right and had called for the doctor numerous times but he never came in the end the baby had to go to scu because he had jaundice and was there for three days before the bombshell. I was called up on my own and informed that they thought they had found a lump but infact i had a son but they could not say for definate as they had messed up big time. After this he was taking to our ladys hospital where we met with the most amazing doctors and surgeons who were so understanding and apolagised for the mistake that had been made even though it was nothing to do with that hospital. It was explained that tiaghe would have to go through genetic tests hormone injections the works to see of we could find out what sex the baby was if it had not beem for the doctors and surgeons i think i would have completely cracked up they were there from the start through to the end. Tiaghe was taken for his first stage surgery when he was 18 months and oh god what a scary time as many of you know you would give anything to swop places with them he was in so much pain but he just got on with it I was so lucky with him. In time he healed from this and just bounced back then came the second stage. This was the worst as when he had the operation he had a very large urine bag on him which was supposed to be on for 10 days however after the second day he accidently stood on the tube and pulled the hole thing out and undone what work had just been done. I have never seen fear like i did with tiaghe on that one as he only had to see the nappy and he stood on the spot screaming in pain i was in tears a couple of times cause the poor little mite had to go through this and there was nothing that could be done. We then had to wait a few months for things to heal to see if he would need extra surgery for the repair or whether they could just go ahead with the third stage we were lucky enough that they could do both so he would not need an extra surgery this is the surgery he has had last monday and the same again he see s the nappy and he freezes and wont move just screams i would do anything to try calm him down but nothing seems to work he is doing well otherwise bouncing back to himself its just when your changing his nappies i am finding it tough if anyone had any ideas or information i would be most grateful to even talk to other mams who have gone through similar situations would be great as it is a rare thing here in ireland. thank you

Rebecca - posted on 02/10/2011

My son had the hypospadias repair in aug last year. Which was had for him and me because you think your the only person going thought it at the time. He gone ok now but the only problem is he doesnt want to take the nappy off for two seconds. So you see my problem i want to potty train him but the nappy in a comfort zone does anyone know how to get though it.

Monica - posted on 10/12/2010

my son antonio had just a mild case of it and had it fixed 1.14.08 6th month after he was born wich scared the crap out of me ....but know 3 yrs later the opening had opend back up and now he has 2 YES 2 opening and were getting at the potty training stage wich now suck cus were goin to have to probley go back to square one after the next surgery i been tellin his prymary car doctor tht there was sumthing wrond every time we would go to clean him he would scream of pain =-( and tht so hard for a mother to see so i work in the hospital were we got referd to uroligest and i happen to work on the same floor and the doctor remimber my face and so i talked to him about it he gave me his card and told me to call in the morning ..so now my son whom is 3 will hopefuly be a normal as normal can be .and will be starting school so hopefuly this goes well the only advise is to keep ur head and be strong and if there a problem and u dont get help go find it from somewhere ellis

Bonnie - posted on 09/15/2010

My son had hypospadias but it wasnt too bad. His urethra was at the base of the head of the penis and he had chordee. He went into Texas Children Hospital on Sept 9 at 9 months old. The surgery lasted 2 1/2 hours. They repaired both problems and I take him in today to have the catheter removed. He was very fussy especially at night on the third and fourth nights. That was no fun. I felt helpless. Though he seems to be feeling better and he doesnt look so "beat up" anymore. I just hope that everything goes somewhat smooth today and I am just waiting till he is completely healed so we can get back to playing!

Becky - posted on 08/14/2010

My son has had 2 operations so far. He was well medicated with pain relief after each one and each time had a padded dressing taped over his penis and a catheter in, both of which were removed after 1 week and it was all healed and fine! Both times seemed harder for me and my husband (taking him for his anaesthetic, giving him all his pain medication and cutting special holes out of his nappies) he was so young he just seemed to take it in his stride. The results out weigh everything else for my son.

Mama.lin - posted on 08/12/2010

My boy born last Jun and was diagnosed with Hypospadias. He'll need 2 stages surgery in 2 year time. He's first correction surgery is arranged in Nov. this year. Just want to know how long does it take to recovery from each stage and is there's any difficulties that I can help my boy to overcome? What kind of uncomfortable situation will happen? Will diaper irritate the skin?

Becky - posted on 06/11/2010

My sons 1st stage repair was to cut and free his penis and bring his testicles down underneath as they were high up and to the sides. They took skin from his foreskin to use as a graft on the underside of his penis where they'd cut it away to free it. Then 6 months later he had the 2nd stage to turn the underside of his penis in on itself so that the bit that was the skin graft has now made his urethra and his wee hole is now at the tip rather than the base. He still has to have at least 1 more op as his testicles haven't descended by themselves. If it turns out he has any little leaks on the underside of his penis or it looks bent, they will also correct this but so far it all looks perfect. When he was a baby he had a catheter put in and some dye added and then a scan to check his bladder etc was all complete and functioning correctly. Luckily it was all fine on the inside, he just had the hole at the base of his penis instead of at the tip and things weren't quite in the right places.
It is amazing what a fantastic job the surgeons can do.

Nicki - posted on 06/09/2010

my son was born with severe 4th degree hypospadias. his first surgery was at 8 months old, second was at 1 year 9 months old & he is due in surgery june 15th of 2010. the first 2 surgerys went wonderfully. i was told this surgery was the "mama" surgery. he was born with only a 1/2 of a urethra tube so they will be taking skin from his cheeks to make a tube. They will close up the hole he pees from between his testicles & try to get rid of some serious scar tissue they have created from the last 2 surgeries.
When my son was born the doctor said "oh, its a boy.oh wait, maybe its a girl". then another doctor in the room whispered to her " Shhhh, don't say it unless you are sure".They took a test to determine gender, but it took 10 days. my baby was also a preemie ( 29 weeker & 2 lbs 7 oz) so he had some other problems. but now he is 2 1/2 years old & up to 29 lbs & no longer needs early intervention.

Becky - posted on 05/20/2010

Hi Andrea,

How long did you have to wait to find out your sons gender? My son was born on a Friday afternoon and by the time we'd both been transported to a specialist hospital it was evening and although they took chromosomal bloods, none of the labs were still open so we had to wait all weekend until the Monday to find out! In my heart I'd always felt I was carrying a boy (I'd even secretly bought some blue stuff) but because he was going to be our last baby I didn't want to know the sex and so made a big thing about them not going near that area at all our scans (and we had loads of extra scans due to other genetical problems). That will teach me :0)

My husband was adament he was a boy but I know that due to pregnancy hormones, a baby girls genitalia can sometimes swell up.

In the SCBU where he was, all the babies happened to be boys and had blue blankets and blue name cards but my son had green/yellow. That made me sad. Also one evening I was walking back to my room reading a consent form for a hearing test that he had to have and one of the questions was 'gender?' at this point I finally burst into tears.

At my 20 week pregnancy scan they discovered my son has short long bones (often a sign of Downs or Dwarfism) and also thought part of his brain was missing! We were offered termination which we obviously refused and later scans revealed his brain seemed fine. Subsequent scans since birth (and again hes had many as he suffers from Benign Paroxsymal Torticollis) show his brain is perfect.

So as you can imagine, my pregnancy was horrible and we were expecting lots of things at birth (which never happened) but never in a million years expected hypospadias.

I'd never even heard of it.

Anyway I was so pleased to read someone else knows what it was like because mostly I feel very alone and often overwhelmed. Please tell me more of your story if you'd like to. I am so glad your son is doing well too. They are so brave. Best wishes to you all. xx

Andrea - posted on 05/19/2010

I know - my son was also "a girl!" at birth and because we didn't know I was shocked because I was so sure he was a boy (and he was!). we go at the end of June to see if he has a leakage and needs a 3rd repair but so far he is doing great. He has no erections that I can tell though so I hope everything is working okay! it's hard to tell on a 2 year old...

Becky - posted on 05/15/2010

My son had severe hypospadias (to the point where we were told he was a girl at birth!) and he has just had his 2nd stage repair done. It is fantastic and he doesn't seem to have had any pain passing urine. He had hormone tests done at 1wk old to check he had enough male hormone to get him through puberty (as well as chromosome blood tests at birth to determine gender and scans to check his abdomen) but never had to have any injections before his treatment. We live in England so maybe it's different here. Anyway, he still has to have his balls dropped as they haven't descended on their own so he still has that op to go. Good luck to all and speedy recoveries xx

S - posted on 05/02/2010

Hey hope you are keeping well and I guess you have had the baby now!
How did the follow up go with the doctor? How is your son doing? Did the hole ever heal up properly? Does he need to go for another surgery?
My son just had his stage 2 surgery on the 22 of April. All went well I suppose, we go see the doctor tomorrow to have the catheter taken out.
Did you notice when your son had the catheter it, did it seem to change direction when healing? That is my concern at this time!
Hope all is well!!

Andrea - posted on 02/28/2010

We had it done at McMaster Children's Hospital. The Surgeon is AMAZING! He used to be at Sick Kid's but had moved over to McMaster pediatric urology, and specializes in hypospadias. I would very highly recommend him - I'd be happy to pass on his name to you if you are in the Toronto area. He didn't have any testosterone the second time around - he's 21 months. I thought he was going to have at least one but we were told it's not necessary. We also kind of rushed his surgery because I'm pregnant and they were going to push his surgery from February to April but I'm due in late March and couldn't deal with a toddler having surgery and a newborn, if I could avoid it. They were great about accommodating us.

S - posted on 02/28/2010

My son as well goes for his second stage in April and sounds very similar although his hole is located on the scrotum between the testicles. If you don't mind me asking where was the surgery done?

Also did your son have testosterone shots 3 months before?

Thanks!

Sarah

Katie - posted on 02/20/2010

Hi Andrea. I will be following this thread as well. My son goes in for his second repair (sounds like a very similar situation) in April. I am curious to hear how the recovery is different from the 1st and the 2nd stage. Hope the healing goes well for you guys.