An urgent referral #
After hearing the word “hypospadias” for the first time, we went home with more questions than answers. We didn’t know how severe our son’s condition was or what treatment he might need. We only knew that we needed to see a specialist.
My husband called to schedule the appointment and was told that the earliest available visit was several months away. He explained how worried he was about my mental state and how urgently we needed help. Thankfully, the hospital found a way to see us much sooner.
A different diagnosis #
Our son was only eleven days old when we met with a team of specialists from pediatric urology, endocrinology, genetics, and psychology.
I don’t remember many details from that appointment because I cried through most of it. My eyes were so full of tears that I could barely see the doctors sitting across from us.
After examining our son, the team told us something we hadn’t expected. They believed he either did not have hypospadias or had only a very mild form. Instead, they thought the main issue was penoscrotal webbing. The endocrinology team also recommended hormone testing.
For a moment, we thought we finally had an answer.
More questions than answers #
A few days later, our son had his blood drawn. He was only fifteen days old. Watching the nurses search for a vein in such a tiny baby was heartbreaking. I held his arm while he cried, and I cried with him.
The hormone and genetic tests eventually came back normal. Instead of giving us peace of mind, they left us wondering even more why this had happened.
As I slowly began recovering from postpartum depression, I found myself returning to the same question over and over again. What if this wasn’t the whole picture?
Learning to do our own research #
Before becoming a parent, I completed a PhD degree. My research training taught me how to read scientific papers, evaluate evidence, and compare different sources. For the first time in my life, I found myself using those skills outside of academia.
I started reading medical papers about hypospadias and penoscrotal webbing. I looked at which surgeons had published the most, which hospitals specialized in these conditions, and where different experts agreed or disagreed. The more I read, the more I realized that experienced surgeons sometimes saw the same condition differently. That made us feel that one opinion was not enough.
Seeking second opinions #
We decided to seek additional opinions from other experienced children’s hospitals. Those consultations gave us valuable information, but they also showed us that diagnosis is not always straightforward. Different specialists sometimes reached different conclusions.
During my research, one name kept appearing in medical papers: Dr. Warren Snodgrass. We scheduled a consultation with his team in Texas.
Finally finding clarity #
Our consultation lasted more than an hour. I brought pages of notes and every question I had collected over weeks of research. I also watched many of the educational surgical videos published by his team. They were difficult to watch because I had no medical background, and seeing surgery on children was emotionally overwhelming. More than once, I found myself crying while taking notes.
Even so, I kept watching because I wanted to understand our son’s condition as much as I could. Every unfamiliar medical term became something I looked up, and every answer led to another question.
Dr. Snodgrass’s assessment was that our son did have hypospadias.
By that time our son was about three months old, we finally felt that we understood what we were dealing with. We scheduled his first surgery for when he was seven months old.
Looking back #
Searching for answers was exhausting, but it gave us something we desperately needed. Once we understood our son’s diagnosis, we could stop wondering what was wrong and start preparing for what came next.
Take a deep breath. One day at a time.
