Everything he was born with is still there. .. But...

[AnnieNimIty]

My son was born with a genetic defect that caused him to be born with his bladder on his abdomen, some problems with his pelvis and his penis basically split open. It is called bladder exstrophy.
So, my son's Dr. said that there was NO WAY to put it back together as an intact penis because of the mass of penis/skin/tissue available.
I talked with her about it and had it clarified to me how the procedure was done.
All off his tissue had blood supply to it from beginning to end. She didn't cut off, she just moved around. But now it looks (after it heals) like a circ'ed penis.
I know that he had to have parts put back together and put back in, but I still am having trouble not feeling like he was circ'ed. I feel so strongly about not having my sons changed that way that this is psychologically hard.

This was a medically necessary surgery in my mind, even though people can live like this. All of what he was born with is still connected to him. But somehow I still feel like I have done something wrong.

I don't know what I am looking for other than a vent. Maybe even this is posted in the wrong place.

[nelson]

I don't no anything about your son's condition, but I couldn't read without posting. I am so sorry that you and your family have to go through this.

[Super Pickle]

Me, too. So sorry for what you all have had to face.

[Kailey's mom]

sweetie, really????? you are being too hard on yourself!!!! You didnt' do anything wrong, you didn't hurt your baby! Please don't blame yourself

[workjw]

You didn't hurt your baby at all. You've made decisions that no parent ever hopes to make, and you did it so that he can live a healthier happier life. There is absolutely no shame in that.

[eepster]

Recently we were just discussing a less complex condition where some boys are born simply without a foreskin. This is from that thread

Originally Posted by brant31

I believe this is quite true. The unique horizontal nerve system of the penis is intact regardless of the natural length of the foreskin, as long as there is no cutting to short-circuit the system. Natural frenula range from prominent and breve to virtually invisible. (For parents who want to take this to email, I can explain this with examples.) Nevertheless, the frenular artery still runs under that area and does its job or delivering blood to the glans/meatus unimpeded since there has been no perpendicular cut from circumcision.

The important thing is the Dr try her best to not compromise nerves and blood supply, and from what I hear you saying that was her aim. Though A full length foreskin might be ideal, what is most important is that your DS's penis function as best it can. If the Dr had futzed around extra to try to create a foreskin, she would have had to cut more and caused more severed nerves and blood supply problems.

One major objection many have to cir is that it is cosmetic surgery that sacrifices function. It sounds like in you DS's case, attempting to create a foreskin would be largely a cosmetic goal that would have meant more complex surgery thus risking function.

Your DS was born without a foreskin, he wasn't circumcised.

[QueenOfTheMeadow]

I know it's hard, but please try not to beat yourself up. You did nothing wrong!

[PuppyFluffer]

While this was a medically necessary procedure and you acted in the best interests of your child, I think YOU have suffered a trauma. So many times, we discount the emotional after-effects of medical experiences. You need to grieve the loss that this experience has brought to you and not deny your emotions. Hugs to you!

[AFWife]

Originally Posted by PuppyFluffer

While this was a medically necessary procedure and you acted in the best interests of your child, I think YOU have suffered a trauma. So many times, we discount the emotional after-effects of medical experiences. You need to grieve the loss that this experience has brought to you and not deny your emotions. Hugs to you!

I agree with this.

You did nothing wrong. You didn't tell her "while you're down there" or anything. You made sure that everything he was born with he got to keep. As far as your son's body goes he is still a whole person. His "whole person" may look different than other boys, but for him it's whole.

[laohaire]

He wasn't circ'd and the procedure was absolutely necessary.

I am also grateful to hear they didn't say "let's just chop it off and you can raise him as a girl." I don't know anything about your son's specific condition but I know that often, when there is a problem with the penis (including a badly botched circ) this is often suggested (or forced).

[FernG]

It sounds like a very traumatic experience. I can't imagine my sweet, new son having surgery. Be gentle with yourself. It sounds like you were a great advocate for your son. You made sure he got to keep nerves and blood supply and let the doctor repair the defect as best as possible. I'm so sorry that you and your son had to deal with medical procedures.

[Marsupialmom]

I think you are being harsh on yourself.

[Storm Bride]

It would be so hard to watch your son go through such a thing.

Mama - you're doing what you need to do to help. One of the things intactivists say on a regular basis is "a foreskin is not a birth defect". That's the whole point - that RIC takes a whole, healthy infant's body, and chops part of it off, for no medical reason. That is so what's happened in your son's case!! This is the exact opposite - fixing a defect he was born with.

Be gentle with yourself, mama. You've done nothing wrong, but I'm sure the emotional aftermath of watching your son go through this has been traumatic.

again.

[Fay]

It is normal for parents of special needs children to go through a grieving process and to feel traumatized by a child's medical procedures. You are doing everything possible to support your son's health and development. Allow yourself to grieve so that you get to the other side of the grief.

[AnnieNimIty]

Thank you all for your supportive words.
I just got the opportunity to come back to this thread. It has been busy.
I needed the support of people who felt as strongly about it as I do.
I didn't think about the fact that what I feel is grief until it was pointed out on here.
Part of the process of his recovery involves 3-6 weeks of traction. So I got to hold and cuddle him for 2 weeks and than I couldn't pick him up so that has made it all harder. He is doing really well so I am crossing my fingers that it is more like 3 weeks than 6.
The Dr's here have been amazing and have listened to my concerns and answered my questions.
The surgeon who did the urological side of it was a big advocate for us to have him put in a full sized bed so that I could still breast feed him.
She said that co-sleeping, and breastfeeding is the best thing for him to recover! I can't say what a blessing she has been.
And nary a nurse has flinched when they walk in on my feeding him. It is so helpful.

Thanks again to all of you.

[PuppyFluffer]

I am glad that the words of support here are helping you. I have thought of you many times since reading and posting. I will continue to send you and your son healing thoughts - for all healing - of the body and spirit and emotions.

[Plaid Leopard]

I couldn't read without offering a hug.
You have been through something very difficult, but it sounds like your son is doing well and you are being proactive in his care. Take care of yourself, too!

[RiverSky]

You sound like a wonderful mother, working hard to help make the best decisions for your son. It sounds to me as if you are doing a very good job. Please be gentle with yourself.

[RheaSilva]

I'll admit that I know little about urology but perhaps there's some sort of grafting surgery he could have when he's older that would simulate a foreskin? You could ask a plastic surgeon about it.

[JessicaS]