Her Letter to the Hospital[posting her letter and email]
As I mentioned, here is a letter I have composed which once sent out, will hopefully open some eyes and set some new guidelines for doctors to actually gain informed consent (as I always thought was the norm?) ... Maybe it will help another child/family avoid this heartbreaking situation!
I have removed my personal information contained within the letter, except my son's first name. If it occurs to you, I certainly don't mind this letter being posted (I tried joining the Forum, but there seems to be a delay in accepting me..?), I would just ask that name of the Dr. & hospital be concealed until this letter is officially sent.
I read quite a bit on the Forum and can't wait to participate as there are so many parents with intact sons facing this ignorance daily and I may be able to help. Boy do I wish I had happened upon this Forum and all of the linked information before picking a pediatrician and a surgeon for my children! I definitely feel empowered now!
Again, I hope at the very least that knowledge of our family's misfortune can help someone else...Would you happen to have a resource list of legitimate organizations that provide support or have an interest in this area (genital integrity/human rights, etc)?
Although it probably won't do much, I also feel that the federal and state officials be alerted of this all too common atrocity and be copied!
July 15, 2007
Our two year old son is a recent victim of an unauthorized preputioplasty. The medical definition of a preputioplasty is plastic surgery of the prepuce. The prepuce is a medical term for the foreskin of the penis.
I have been trying to protect our son's foreskin since prior to his birth when nurses, pediatricians, even family members and society in general with unsolicited advice to circumcise him bombarded me.
He is two years old. His name is Liam. He is our beautiful son, protective brother, and I am proud to say, fully intact.
Since birth, Liam has had an undescended testicle that occasionally allowed gravity to prevail. It was also recently discovered that along with the undescended testicle, he had a hernia, which were both to be operated on July 11, 2007. I authorized these two necessary medical procedures. One of our strongest concerns, aside from Liam being put under anesthesia and receiving a caudal block, was that his genital integrity not be compromised! Our family drove two hours to Ignorant Hospital in Ignoranceville as we were convinced Liam would receive optimal care there.
We could not have been more wrong.
While Liam was in recovery after these two procedures were performed, I noticed that his penis was extremely swollen. I asked the nurse why and she said it was probably just an accumulation of fluid that gravitated toward the penis due to the surgery.
It wasn't until hours later, during a diaper change in a rest area on the way home from the hospital, that I realized, to my horror and disgust, that the surgeon had forcibly retracted my son's foreskin.
We were not asked permission to allow the surgeon to perform this barbaric procedure and certainly would not have given any authorization to do so. I was not advised by anyone after the surgery that my son's genitals were manipulated and mutilated until the surgeon returned my phone calls once we were back at home. The surgeon's excuse for performing this horrific procedure was that my son had a phony diagnosis of phimosis, adhesions, as well as a build up of smegma. The definition of phimosis did not apply to my son and was definitely a convenient mis-diagnosis. My son had, for his age, a natural semi-retractable foreskin that retracted halfway, that was otherwise loose and allowed normal, non-painful urination. The beneficial smegma (that the surgeon negatively referenced) had been, over the last two years, working its way toward the tip of the penis (prepuce), as it is expected to do so in nature. Liam never had any complaints about his penis.
Natural separation would have definitely occurred in its own time. His penis and it's development were completely normal and should have been left alone!
This procedure, a preputioplasty, was done not for the benefit of my son's well being, but as a benefit to the surgeons and hospital's financial well being.
When he returned my calls, the surgeon instructed me to completely retract my son's foreskin approximately 3-4 times daily and apply Neosporin to the wound. Although at this point a bit wary, but still assuming the doctor knows best, I followed his instruction reluctantly three times (my son kicking and crying every time, screaming in agony when I applied the ointment) before calling the local pediatrician and urologist for alternate advice (which the pediatrician and urologist's physician assistant gave me: being told to leave it alone with very minimal, not full, retraction and/or gentle hygiene (soaking in a bath)). Additional medical advice I have since acquired suggests leaving the foreskin completely alone, avoiding any sort of retraction whatsoever, most specifically, forceful retraction!
It broke my heart that by temporarily following the surgeon's uneducated advice, I caused my son even further pain, adding to and repeating the agony of disturbing now existing micro-tears and exposing a raw wound in a part of the anatomy which is so highly sensitive. I am mortified at the idea of potential physical scarring that my son may suffer as a direct result of this Surgeon's barbaric actions. It is bad enough that a two year old endure any type of surgery and that Liam had the unfortunate experience of needing a hernia corrected.
Dr. Ignorant has added insult to injury; traumatizing my son by forcibly retracting his foreskin. Because of the actions of Dr. Ignorant, forcibly tearing the flesh of the balano-preputial lamina (which connects the foreskin and glans, the synechia) destroying the skin that is considered the first line of defense and by prematurely stretching the phimotic ring (preputial sphincter) jeopardizing potential, natural elasticity, my son has experienced swelling, redness, painful urination, sleepless nights and anxiety. My son has been exposed to potential iatrogenic infection, adhesions and acquired phimosis. The American Academy of Pediatrics and the rest of the world, for at least ten years or more, have been saying to leave the normal development of the prepuce (the foreskin) alone! This is not new information!
My son is two years old and had years before him for his foreskin to naturally separate from the glans in a non-traumatic fashion without any uninvited medical intervention. He has been traumatized. His body has been violated. Our whole entire family has been traumatized, our lives have been disrupted and adversely affected.
Dr. Ignorant and the hospital's nurses not only violated my son, but violated our trust in the medical profession. It hurts Liam to urinate and his disposition overall has been altered. He is anxious and disagreeable (understandably so) about diaper changes and going to anyone with the label Dr. when he used to be quite passive in these contexts.
I am reporting this doctor, Dr. Ignorant, UPMC Ignoranceville to the hospital administration, bioethics committee, patient advocacy group, any board, organization and insurance (I have advised the insurance company that this procedure was not authorized!) that may take interest in my son's situation and his future well being.
Any medical professional who undermines a childs parents by ignoring their ethical responsibility to gain informed consent (and who consequently violates the basic human rights of a child) must be exposed, so as not to abuse the children of our society in the future as marketing tools or platforms for their own financial benefit. Our trust with the medical profession should not be compromised by condoning unnecessary and unauthorized procedures on our loved ones.
Please bring any relevant information or cases you may know of that are similar to our family's situation to my attention. Please include a mailing address for your organization if you have received this letter copied in email as I would like to include you as a copied party of interest on any further correspondence I have with the hospital's administration or regarding the formal complaint to be filed with the Commonwealth of Pennsylvania's Medical Licensing Board.
Thank you in advance for your interest and for any help you may be able to provide.
(Heartsick parents of Liam)