An information and support resource for families with children, teens and young adults who have a DSD
A Parent's comment on 'Surgery in boys'
Dear dsd families, thank you for posting this document. I think it is written in such a kind way; clearly Dr. O'Toole is used to explaining these things to people in an easy to understand way. I wish more doctors could be so clear!
There are a lot of things that came up for me when I read this document and I would like to mention them, just to see if anyone else has the same worries.
I wonder about comments made on scarring. Re: 'The amount of scarring varies from boy to boy. In some the scarring will be minimal and the penis will simply look circumcised.' As I understand it, scar tissue can often be uncomfortable, tight feeling and sensitive. How long does this discomfort last in most cases, and will it affect an erection in any way, such as causing pain, or slight bending?
The part Dr. O'Toole put in about nerve damage was very comforting but I'm a little confused because I understood that our sense of touch was based on nerve endings and the signals sent back to the brain. I nearly cut the tip of my finger off but it was saved by bandaging and now when things touch it from a particular angle, I feel pins and needles. Most of the sensation is normal, but the pins and needles comes up often enough for me to know it's never going to heal. Aren't there nerve endings going to all parts of the skin? Perhaps fingers have more because of a greater need for them in the hands? Anyway, I guess my question is if one cuts into the skin, aren't nerve endings being damaged by definition of being cut? If it hurts me, won't it hurt my child?
Another question I have is about memories; one of the reasons for doing an early surgery is so the child won't remember it. I wonder why not remembering the surgery is a good thing. If something so important takes place in someone's life, shouldn't they remember it? Shouldn't they in some way give consent to it? I'm resistant to early surgery for this reason. I ask the question about consent because we have to trust our doctors or we can't make good decisions based on their recommendations. If I were a child who had surgery done on me without my consent, I might have a fear of doctors. And if I fear that a doctor will do something against my consent when I'm under anaesthesia, will I allow any further treatments done? If my mother makes a decision about this before I can agree, will I ever trust my mother? So the whole element of not remembering could cause trust issues, in my opinion.
I don't want to go on and on, but, under what circumstances would a surgeon consider surgery to be in the best interest of a child who doesn't need it for survival, or physical comfort, and safety? Are there guidelines for this or is it just the instincts of the surgeon and parent? (I understand that a child will have a much easier life if the parent accepts him or her, so surgery is necessary if the parents think it is simply because they have to accept their child long enough to rear it. However, if the parents have no real issues with the way the child's genitals look anyway, could they be counselled to wait, could they spend time with a psychologist before making these decisions?)
Finally, everyone may find me full of contradictions because I seem so anti-surgery, but I'm not really. I'm just a mum who needs to be convinced that surgery is the best way to go, and I take a lot of convincing. So my final question is about adulthood.
Our surgeon recommended pre-puberty surgery because of danger associated with bleeding after puberty. He said the number of blood vessels in that area are much greater after puberty. Is childhood surgery preferable to adult surgery to modify these anomalies? If it is dangerous for a full grown man to have the surgery, a parent should know this. There may be issues to do with scarring that a child wouldn't have, as well. (So we may want to try to protect our son from having dangerous operations as a man). I think it's none of my business what my son does with his private parts once he's a man. And there is a chance he won't want the surgery at all....I'm so confused about what I should decide on my child's behalf