In 2015, the late Dr. Douglas Canning of the division of urology at Children’s Hospital of Philadelphia in Philadelphia, Pennsylvania, wrote a response to an article by a group of urologists who talked about the complication rates of hypospadias surgeries. The article is titled, “Can We Correct Hypospadias with a Staged Operation? If not, are We Bold Enough to Report it?” (The Journal of Urology, Vol. 194, p. 284-285, August 2015). I would like to summarize what I think is the main point of the article. The group of urologists from Houston, Texas, followed a group of 56 boys with proximal hypospadias. The group of surgeons was known for its excellence for surgery. In Dr. Canning’s words, they courageously share their results demonstrating a complication rate that is higher than what most surgeons would quote to new patients. In Canning’s words, “By doing this, we have misled our patients, their families and our colleagues.” (page 284)
Looking back at my own experience as a parent, I would have liked a frank presentation of the facts regarding the complications and long-range outcomes of hypospadias repair surgeries. Patients always have the right to ask, what are the consequences of not doing the surgeries that doctors propose, or in the case of hypospadias, what might be the consequences of waiting until the boy is in late puberty and can participate in his own decision making, or what might the consequences be of just doing chordee repair and not reconstructing the urethra. I never got to ask those questions, and no one on the medical team thought to open up those discussions…
Therefore, we need the good will of the doctors who can help us. I think that the late Dr. Canning is suggesting just this.
It bears repeating that in my view, responsible medical care would include a frank presentation of the facts regarding the complication rates and long-range outcomes of hypospadias repair surgery. It would also include a discussion of what it might mean to reject surgeries for babies or to wait until the boy is in late puberty and can participate in making his own medical decisions. So taking time and getting all the information possible is critical for good decision making.
Here is what I would like to say to new parents:
My central position is that if your son is urinating healthfully, he is in excellent urological health. He has a physical difference that will need special psycho-social handling. But once you begin with surgeries, there is a 50 percent complication rate for proximal hypospadias.
According to the Children’s Hospital of Philadelphia (CHOP) web site, “Hypospadias surgery is complex. The risk of having a complication or issue after the repair depends on the degree of hypospadias. Published complication rates (the need for an additional, unplanned procedure) for distal (mild) hypospadias range from 10% to 20% and up to 70% for proximal (severe) hypospadias.”
A parent needs to consider that often these complications do not resolve themselves—they create medical urological problems that get worse over the years. It’s likely that the urethra your son was born with is better than the one they can create in the operating room.
A parent needs to consider that often these surgeries are also traumatic for the babies and the families. Often parents are told that the babies will heal better than older children, and that they won’t remember the surgeries. However, when I see the title of the best-selling book on trauma, “The Body Keeps the Score” by Bessel Van Der Kolk, I think of our hypospadias surgery survivors. The trauma is in their bodies and is deep in their experience. In the 50 percent who will need repeat surgeries, the trauma recurs and it is possible that the repeated surgeries deplete the boy and his family of energy and stamina, drawing down an individual’s physical and mental resources. As a parent planning for the long-range health of your baby boy, you need to consider the possibility that over his lifespan your son might face other medical challenges. We don’t know the long-range consequences of early surgeries. We need to wonder if early surgeries for hypospadias deplete some of the physical and mental stamina that one needs to go through medical challenges. As a parent you are planning for the long-range medical well-being of your child.
Ongoing complications certainly are a challenge for the urologists and urology surgeons who have trained long and hard to earn the experience that it takes to do these surgeries. But for the parents the ongoing risk is that these surgeries will create a hypospadias cripple, that is, someone whose complications create such challenges for the surgeons that they cannot solve the problems the surgeries are designed to fix.
Recently I had the opportunity to attend the 2024 Society of Pediatric Urology (SPU) Fall Congress in Louisville, Kentucky, and had the pleasure of speaking to more than one pediatric urology surgeon who themselves expressed their own deep frustration over the complication rates for these proximal repairs—they too want better outcomes with lower complication rates for their patients with proximal hypospadias.
Once complications arise, the reality is that finding compassionate, skilled medical care becomes an ongoing challenge for men with hypospadias, and can easily become a drain on their energies, sometimes compromising their abilities to focus on their education, career development, and personal relationships.
Another matter parents need to consider is the development of medical issues that need to be addressed during the aftercare from the surgeries. Often boys are discharged very soon after the surgeries and parents become responsible for the aftercare. This can be a huge challenge for parents and siblings. People need to take time off from their jobs and juggle difficult post-operative needs with all the other needs of their families and work. Given the high complication rates, perhaps parents need to consider if the repair surgeries are appropriate for their child.
Two more questions that parents correctly have: How do I raise a confident boy with positive self-regard, and should we wait for our son to grow up in order to be involved in the decision to get the surgeries?
These are difficult questions when parenting is already the hardest job. Parenting a boy with hypospadias is challenging because often families are secretive and isolated. You need social support and professional support. And yes, perhaps you should wait for your son to grow up in order to make his own medical decisions. Two warnings though—if a boy idealizes the possibilities of surgeries because he believes it will definitely solve his hypospadias, he might not be able to make a medical decision with clear judgment. And who among us has raised our boys with perfect self-esteem? Ambiguity and insecurity are part of our normal experiences.
I don’t know if the late physician Douglas Canning of Philadelphia would have agreed with me in using his words to support an argument that is against hypospadias repair surgeries. It is a great loss that he is not here to ask. But his words add an important dimension to the conversation.
In short, parents need to consider that if their sons are urinating healthfully, they are urologically healthy. Parents need to consider that these surgeries have a 50 percent chance of creating medical problems that will be difficult to solve and will increase in difficulty over the years, especially regarding surgeries for proximal hypospadias. Perhaps parents should take time to rethink the automatic rush to surgeries, time to consider that the baby is urologically healthy. Perhaps we should leave well enough alone, and get the social and psychological support that it takes to raise an independent boy who has the self-confidence to accept his body the way it is. Then he will be free to use his precious energies to live life without worrying about medical interventions for hypospadias.
References
Canning, D. A. (2015). Can We Correct Hypospadias with a Staged Operation? If not, are We Bold Enough to Report it? Journal of Urology, 194(2), 284–285. https://doi.org/10.1016/j.juro.2015.05.035 (Original work published August 1, 2015)
Children’s Hospital of Philadelphia. (2019, April). Hypospadias Surgery Outcomes. Hypospadias. https://www.chop.edu/conditions-diseases/hypospadias#:~:text=Hypospadias%20surgery%20is%20complex.,for%20proximal%20(severe)%20hypospadias
Van Der Kolk, B. (2015, September 8). The Body Keeps the Score; Brain, mind, and body in the healing of trauma. ISBN 9780143127741. Penguin Books.