My Experience with HEA
My name is Cherise O’Kennedy. My son was born with subcoronal hypospadias. He had a repair done at the age of 13 months. He is now five years old.
Both before and after the surgery, little information was given to us to support us through the process. That is when I went on my search to find more information on the emotional and psychological aspects of hypospadias, and that is when I found HEA. The information, personal stories, and chat rooms were incredibly helpful. The dedicated volunteers and parents helped us through the complications my son had right after surgery. I am so thankful for HEA.
I would like to give back now and offer the same kind of support to other families. This is why I wanted to become a board member. My goal is one of advocacy. I would like to create awareness that there are organizations like HEA to support boys, men, partners, spouses, and families through their journeys.
Our Journey with Hypospadias
Our journey with hypospadias began in 2006 when we saw the beautiful face of a two-year-old boy who was diagnosed with hypospadias. This boy would soon become our son; just nine months later, we traveled to China to finalize his adoption. We were overjoyed to finally have him in our arms but soon discovered that he was a very sick little boy. We spent most of our two weeks while in China in the hospital, fighting an infection that was in his testicle.
Upon our arrival home, we immediately took Blaine to the hospital, where they diagnosed him with hypospadias and hydrocele, a collection of fluid in the testicle that had become infected. They also noted that he had one undescended testicle and needed to have hypospadias surgery as soon as possible to get the best outcome. They treated him with antibiotics and sent us home. This infection returned countless times over the next couple of months, and finally, because of its severity, they admitted Blaine to the hospital. We were in the hospital for two weeks, having many tests and trials with different antibiotics. He was now diagnosed with ambiguous genitalia, something that most of the doctors did not want to discuss. I had many questions about this new diagnosis and asked for a chromosome test. I was told no. After many of my questions were left unanswered and they said that I was overreacting and Blaine did not need further testing, we changed care.
Our new doctor, a pediatric urologist at Children’s Memorial Hospital in Chicago, reviewed our file and immediately ordered chromosome testing. The results showed that Blaine had a chromosome difference of 45X/46XY mosaic, and he was diagnosed with mixed gonadal dysgenesis. Blaine’s diagnosis consisted of a hemiuterus, a partial vagina, an undescended streak gonad, ambiguous genitalia, penoscrotal hypospadias, poor growth, and hearing loss. Because of his internal anatomy, urine pooled into the hemiuterus, which drained into his testicle, causing the infection. Surgery for this as well as for hypospadias was done. Fortunately, the cause of the infections was taken care of and he has been infection-free for two years. Unfortunately, the hypospadias repair was disastrous. Every complication that could occur did, which required several additional surgeries. The result was that he still has penoscrotal hypospadias.
After constant conversation, research, talking with others, and second and third opinions, we have decided to not have any additional surgeries done. Blaine is a healthy, happy, well-adjusted little boy. We do not want this to change.
During this journey, I was fortunate enough to find Jim Lake, who provided me with a tremendous amount of support and guided me to HEA, where I found others who were living with similar situations. For the first time I found that I was not alone and that my son would not be alone with hypospadias.