Parent Talk: Our Decision
Keyan came home from China in February 2009 at 9 years old. He had unrepaired bladder exstrophy with an absent phallus. It was obvious that a repair was attempted in China, and it was also very obvious that it was unsuccessful. Since his arrival, we have met with three pediatric urologists to discuss the exstrophy repair; each of them is very knowledgeable and well respected. Each had a different philosophy and recommendation.
The responsibility of making the best decision for Keyan’s surgery, for his future, weighed heavily on my husband and me. How could we possibly make this kind of decision? We are not urologists, we do not have a medical background, and we couldn’t know what procedure would be successful. How would we justify our decision to our son? These and many other questions tortured us.
We began by talking with Keyan, learning from him what he wanted and expected and how he felt about each procedure, the doctor, and the hospital. We also met with a psychiatrist who works with children with disorders of sex development. We had multiple meetings with each doctor to better understand each procedure, its predicted outcome, and their experiences. We were also fortunate enough to have a wonderful support system, adults, children, and parents affected by bladder exstrophy, from whom we learned a tremendous amount.
With this knowledge and information, we made a decision. We must believe that we did our best for Keyan and that we made a thoughtful decision based upon facts, experiences, recommendations, and our love for him. We will keep documentation of this decision-making process so that he can later know the hows and whys and hopefully understand that we did the best that we could.