Chordee Repair 3 Years Later

It's been 3 years since my little guy had his chordee repair and I still don't like it. It still points to the side and has some skin bunched up underneath. He had an appointment with the specialist about 6 months ago and he said my son looked fine, there was no problem, it all looked good. I disagreed. But there's nothing I can do about it now.

I still regret it. 

I wish I could go back in time and tell the doctor no.

I wish I had kept my son intact.

My advice to others who would like to keep their son intact...you can always do it, but you can't undo it. So make sure you're doing the right thing.

Chordee Repair 7 Months Later

A reader asked me to post an update and fortunately our son had an appointment yesterday, otherwise I'd have nothing to say. It's been about seven months since our son had his chordee repair done and six months since the last time we saw the doctor.

The urologist says that our soon looks good and that he is happy with the result of the surgery.

That being said, we're not happy. Both my husband and I regret allowing the surgery. Mainly because now instead of pointing down, our son's penis points to the left. This is okay with the doctor (his words: Left, right, up are all okay. Down is not. We fixed the down.) The doctor asked if we had seen him have an erection. No. We haven't. The doctor said that with an erection, his penis should point straight. Great. So do guys have erections when they pee? So now instead of peeing on his feet, he'll pee on the person next to him. Yes, that's a joke, hopefully it'll never get that bad. I guess it could fix itself?

I also asked about the extra bumps underneath and was told it would fix itself as he grew bigger or straighten out with an erection. That still doesn't help the locker room type thing. Will other boys notice a difference?

I struggle with the outcome of this decision. I still have regret that he's now circumcised. I feel like I should have protected him more and I pray that he won't hate me for this one day. As parents we're supposed to do what's best for our children. Sure, I suppose in the eyes of the medical community, we did what we were supposed to do. We had a doctor "fix" the problem. But...deep down...I feel that it created other issues that we'll have to deal with. Maybe we should have just left it alone and let him decide when he was older.

I'm sure that would be hard if he decided to do the surgery at age 16 or 20. Maybe he'd hate us for not doing it. It's so hard to understand something that you can't see or feel and that he can't either - at least for another 16 - HOPEFULLY MORE - years! It wasn't hurting him. Wasn't bothering him. Only the doctors saw a problem and that was only because our son was there for a different issue. Had we not had that issue, we wouldn't have known for a long, long time. Was it really a problem? Or more the surgeon's "need" to cut?

I'm not trying to sway anybody out there one way or another. Just trying to tell our story. I couldn't find a lot on chordee repair after the fact and I wanted to make sure there was something out there people could read. Maybe the surgery is the way to go. Maybe not. Maybe your child's is worse than ours. Just make an informed decision.

I'll update when I have new information :) Thanks for reading and if you have questions, leave a comment.

Follow Up

My son had his follow up last week. The doctor saw him for a whole two minutes - if that. We were concerned about the underneath of his penis. It still looks bunched up. And it points to the side a little. The doctor looked and said it was fine. He said it takes a long time to heal, that the swelling would take a while to go away, and that it would get better with time.

Didn't look swollen to me. Looks just wrong.

He wasn't concerned about what way it was pointing. He said it should be fine.

He said to come back in six months for the next follow up.

I'll trust him for now. But if it doesn't heal...he's going to hear from me.

I still feel horrible for the little guy. My husband believes we did the right thing. I'm still kicking myself. I never should have put him through that. I should have waited and let him decide when he's older. I can only hope it heals good and he'll forgive me.

Chordee Surgery

Against my better judgement, we went through with it.

I regret it now.

I hope I'm wrong.

I left it mainly up to my husband since he's a man. Also it seemed that the older my little guy got, the more noticeable the curve got. That and the thought of my son having to go through penis surgery as a teenager led me to go ahead with it.

The pediatric urologist had told us that he had an incomplete foreskin and he would use that foreskin in the surgery to fix the chordee. I really didn't want this to happen, but all the doctors I talked to agreed. A couple of them said our son could have the foreskin repaired later on. I guess I'll leave that up to him if he wants to.

As far as I know, his penis was a normal looking penis. Now it's not. That's why I regret it. Maybe it still has some healing to do? Maybe it'll look better in another month or two? I hope so.

We arrived for his surgery at 6:31am - 1 minute late and they had already called my cell phone looking for us to check in. Surgery wasn't until 9am. Picky people! We waited and waited and waited some more. They called us in to talk about insurance and then we waited some more.

Finally we were called into triage. They checked his vitals - height, weight, temp, heart rate, etc. Then back to the waiting room. Very frustrating with a baby who is breastfed and can't eat!! Then the nurse called us back and went over his health history. We were then taken to a new waiting room where we met with the anesthesiologist and then the doctor. After signing the papers, we waited in this secondary waiting room some more. At least they had these bubble tubes that our son liked to watch.

And then it was time. Time to hand my baby over to strangers knowing there was always the possibility something would go wrong and I'd never see him again. Hold him again. I told myself over and over this was a simple procedure. It would be okay. But my heart still pounded when they took off with him.

Back to the first waiting room where the next 75 minutes crept by. Tick. Tock. Tick. Tock. Until the doctor came. "Everything went fine," he told us and I could breathe again.

He said the tissue - not just the skin - was bent so they put some stitches in. He also said there was a hypospadias but it was so close to the regular hole, there was no reason to fix it. He said they'd come get us in a few minutes and to see him in a month. Thankfully we didn't have to go back 2 days later because the doctor didn't need to put in a catheter.

A few minutes later, a nurse came and got us. We followed her back to the recovery room. She stopped at one of those anti-bacterial hand pumps and we "washed" our hands. Seeing my little guy all hooked up to wires broke my heart. He was still sleeping and had a tube in his mouth. It wasn't hooked up to anything. It had been while he was in surgery, but now it was just keeping his mouth open, protecting his airway.

He was hooked up to other things...heart monitor, oximeter, blood pressure cuff. His little blue and white blanket from home covered his body. He looked so hurt, so sad, even when sleeping. Like something had been taken away from him.

While he was sleeping, we got to see his "boo-boo". It was sooo red and swollen. Not too much blood, just a little on his diaper. He had a clear bandage wrapped around his penis. It reminded me of plastic wrap. They said to take it off in 2 days and if we couldn't get it off to bring him in so they could take it off. They stressed that we could cut if off. Seeing how snug it fit on him, there would be NO way I would take scissors to it.

He slept for a while. The nurses finally tried waking him up and he screamed and screamed. This was one time I didn't mind. I wanted to hear him cry, to know that everything was okay, that he wasn't brain damaged.

He nursed for a little while, they gave him some pain meds, and then he threw up and fell back to sleep. We had to wait for him to wake up more and stop throwing up to leave. It took a while. My husband went to get us some lunch. The nurse insisted on me waking him up and I hated that. I know they had to make sure he was okay before sending him home, but I wished we could have just rested. Soon he was awake and screaming.

We checked his diaper area again. Still awful looking. I immediately thought it looked better beforehand. We went home. He seemed to be doing okay. Clingy, but not overly cranky. He even got down to play but when he tried to walk sideways along the coffee table, he screamed. I guess separating his legs like that hurt. He didn't want to try again for a while.

We gave him the pain meds round the clock for a few days. He was also on antibiotics. The clear bandage fell off the next day. There were still blood spots on the diaper, but never a lot of bleeding. His penis looked horrible though. It was very swollen and then black and blue, purple, eventually yellow. It took at least a week for the head of his penis to be less red.

But it doesn't look normal. It's been almost a month and underneath is "bumpy". I noticed after a week or so that he seemed to have a pimple looking thing underneath. Now there are a few. I'm guess it's just a bunching of the skin, but I don't know. It looks odd. This is why I regret it. He might not be curved down anymore, but it points to the side - is that normal? I don't know. And he has this bunching underneath. I don't think anyone would have made fun of him beforehand. He looked like an uncircumcised boy without a LONG foreskin. It was shorter and there's not specific length, so would anyone have really noticed? But now!!! Now it's just weird. His follow up appointment is next week and I hope they say this is normal and will go away in a couple of months. I pray they don't say he'll need cosmetic surgery to fix it. UGH!!!

He also doesn't like me to hold him on my hip. Ya know with one leg on each side. He clamps his legs closed and cries. I don't know if it still hurts him or he just remembers that it hurt him at some point.

I hope that I'll change my mind and say this was the right decision. I hope all heals well and he's never teased and it never gives him problems. It was such a hard decision and I can only pray in the long run it was the right one.

I'll keep y'all updated.

On another note, I just want to say that the hospital was great. Even though we waited in the waiting rooms for a long time, they were nice, child friendly waiting rooms. Toys, ride on cars and bikes, movies, books, computers, plugs for phones, etc. There was a separate waiting room for people to eat food - so they kids who weren't allowed to eat wouldn't have to watch other people eating and be jealous. The nurses were nice. They called afterwards to make sure he was doing okay. So that part was a good experience.

If We Don't Talk About It

Still on my quest. I don't like any of the answers I've been given. My husband is afraid I'll keep searching until I find a doctor who will say what I want to hear and then I'll choose him. He's probably right. I want a doctor to tell me none of this is necessary. His 'curve' is unique and should be kept and his intact penis is perfect. That won't be happening.

We scheduled the surgery...me unwillingly. I keep trying to back out. He keeps saying we should do it. It's not until December which gives us time to discuss, research, and think about it. However we haven't done any of that this past week or so. I think we're in the mentality if we don't talk about it, we can't back out. Or maybe if we don't talk about it, we won't think about it.

Whatever it is...it's not the right thing to do. We need to talk more about it. Both of us need to be in the right state of mind. I still can't imagine putting my baby boy through this.

My Quest #2

I decided to post on a Facebook group called The Whole Network about my son's problem. A response I received suggested I contact the people at NOCIRC. So, I did that. I received an email back quickly. I was given a few names to contact. 

The next day we called one of those doctors, a pediatrician in another state. This doctor answered his home phone to talk to us. He explained that he was not a pediatric urologist, he was very foreskin friendly, but he was pretty sure that the chordee surgery would require a circumcision. He recommended that we call a foreskin friendly pediatric urologist. He gave us two names.

My husband and I called one of the doctors who wasn't in that day and emailed the other one. The one we emailed responded within a few hours. He said that because he couldn't see Lucky, he couldn't tell us for sure what to do. I understand that. I just wanted a general recommendation. He said that a circumcision is done with the chordee repair but he can do foreskin reconstruction IF there's enough skin. He also said he recommends surgery if there is a 30 degree bend with an artificial erection.

Neither of the doctors we saw did and artificial erection. So I'm not sure what to make of that. 

I also read this page where men talk about having hypospadias (hypospadias is common to have with chordee, although it can be separate and in Lucky's case it is, however you can't find a lot of info on just chordee alone). It seems like you can't win. Some men are happy their parents had the surgery done when they were little. Some men were mad at their parents for having the surgery done. And some were happy with their decisions. I read about men who were made fun of and boys who were deeply scarred - inside and out. I also read about men who had no problems at all. 

I still don't know what to do. My husband and I keep going back and forth. It's miserable.

One Mother's Quest #1

We finally have a son. After five daughters, we were blessed with a little boy. I was shocked to say the least when the ultrasound tech told us it was a boy. I didn't think it was possible. I honestly thought the miscarriages I had were gender related.

Lucky came into this world in a birthing center. He was beautiful. I got to cuddle him right away and we were on our way home 2 hours later.

Fast forward six months...I asked the doctor to schedule a VCUG for him as well as one of my other children. My oldest daughter had a renal reflux which means urine goes back up to the kidneys and if it goes untreated can cause kidney damage. Hers was caught early and she was put on antibiotics and a few years later had surgery. Because there is a high risk of siblings having this disorder, we had to have each of our kids tested.

I slacked.

Well, no, the pediatrician in Virginia slacked. When our fourth daughter was born in Virginia, the pediatrician said they didn't routinely do VCUGs to test siblings. This was news to me. The state we lived in before highly recommended this test. Not really wanting to put her through the testing I stupidly caved and let it go.

Then we moved to the state we're in now. Our fifth daughter was born and was tested. Then came along our son. When daughter #4 had some toilet-ing issues, I asked our doctor to get both her and our son tested at the same time.

Our daughter is fine - thank goodness - if she had the reflux I probably could have gone ape on the pediatrician in Virginia.

Our son has renal reflux. Bilateral. Grade 2. This apparently isn't as big of a deal in a boy as it is in a girl. However, it's still recommended that he be on antibiotics until the reflux resolves on its own or surgery is done.

This was told to us by a pediatric urologist. He then discovered Lucky has a chordee. I asked him to write it down so I could research it. He said Lucky should have surgery to fix it soon. They would also circumcise him.

I shut down right there. I am intact friendly :) I believe little boys should be left alone. I do not believe we as a society should routinely cut off foreskin. I've heard all the arguments. And my response is and always will be "it's not my body" or "it's not my choice". This is his. If he wants to cut off a body part, he can when he's 18. This is not something we should do to our babies. There's nothing wrong with them!

I can't understand it. It's cleaner? Easier? Really?? You females out there... if someone cut off your labia because it was cleaner and easier for you, would you be okay with that? What about how it looks? If doctors and society cut off our nipples so that our breasts would be nice and smooth to the touch, would that be okay?

NO. No it wouldn't. No. No. NO.

So why is circumcision okay? Routine circumcision. I'm not talking about people who do it for religious reasons or people who have to have it down for medical reasons. I'm only talking about the routine circumcision.

Back to my story...I don't want my son circumcised. However the medical community seems to only know one way to fix a chordee and that happens to include circumcising. Now I have to decide whether he should have this surgery at all and if he should, do I allow the circumcision to be done? What if I can't find a doctor willing to do it that way?

I'm going to try and keep this blog updated with what's going on so if anyone else has this problem, they'll know they're not alone.