Today is the 5 year anniversary of Leo’s diabetes diagnosis. Most parents of diabetics remember that date in their lives as prominently , but certainly not as celebratory, as their birthdays. Upon hearing that Leo was so young, I was always asked, “Diabetes at 13 months? How did you even know?”
The truth is that Leo’s diagnosis caught us completely off guard. Since he was in diapers and was a voracious eater/drinker since birth, the telltale signs of diabetes such as frequent urination and increased thirst were not clear. Furthermore, my family members and close friends were more concerned about my health at the time. Complications of the emergent c-section I had with Leo left me with a debilitating painful neuropathy. It has improved over the past 5 years, but at the time, I was not hopeful it would ever improve. After trying many therapies with many doctors, we decided that a surgery to resect the problematic nerve was the best option. This controversial surgery was only performed by a special neurosurgeon in Georgetown and we planned the surgery for September 2007.
Ultimately, I canceled the surgery because of other symptoms that cropped up, and this turned out to be a lucky stroke of fate. Three days after the scheduled surgery (when I would have been recovering in a hospital in Washington DC) 13 month old Leo ended up in the Pediatric ICU in Diabetic Ketoacidosis. His only symptom had been an awful diaper rash and some increased fatigue.
October 1, 2007 was a busy Monday in my pediatric office When I came home the babysitter told me that he had white spots in his mouth and was crying a lot. When I arrived home I saw white spots were oral thrush,which is uncommon at this age. This combined with the diaper rash made me ask myself: why he would have yeast overgrowth in 2 different parts of his body? It was something you would see in immunocompromised patients, and there was nothing wrong with his immune system. But could it be diabetes? Come to think of it, maybe he was going through more diapers than usual, but then again, I had never seen a child diagnosed so young.
With that question in mind, I brought to him to an after-hours pediatric emergency center instead of my own hospital because I knew how busy the ER would be. Perhaps I think I was in denial of the fact that Leo probably needed tertairy care. One of my former residents, Andre, was the attending physician that night. When they drew Leo’s blood without him even flinching, we knew that something was wrong. Andre showed me the lab slip without speaking (this was difficult for him as well) and his blood sugar was 880-that’s near coma level. I let out a slow “NOOHHHHHH“ wail. I was alone there with Leo. My husband Adam was at home with our other children on a conference call. He didn’t know why I was in such a rush to seek medical care that evening. Adam is not a physician, so when I called him he didn’t understand. “I know diabetes isn’t good-my Nana had it. But why are you freaking OUT?” Being a doctor, I knew our lives would never ever be the same again. From that moment on, Leo’s life would completely depend on insulin and strict management of his blood sugars and food intake. Every parent has hopes and dreams for a long, fulfilling life for their child. I knew that I needed to work as I hard as I could for as long as I could to ensure he could live without complications of this awful disease.
As the medical staff arranged for hospital transfer, I fielded phone calls from my mother as she was crossing the Tappan Zee Bridge to help us, concerned friends who were trying to help out in any way, and my work colleague Vicki who was taking call for our pediatric practice that night. We all shared degrees of shock, worry, and sadness.
After the calls, I took a deep breath and tried to sit calmly with Leo in the small, brightly-colored, child-friendly exam room and watched a silly show that was on TV. I looked down at him, his enormous eyes, dark hair and cherubic face. He was a baby, helpless and completely dependent on us. He was not able to understand the show we were watching, let alone how this diagnosis would affect his life. As I held him, my tears fell silently onto our already drenched clothing. In order to flush away the ketones in Leo’s body and correct his metabolic condition, he needed a lot of IV fluids. This was causing him to urinate so much he was constantly leaking through his diapers, no matter how often we tried to change them. Who would have thought to bring a change of clothes?
My sadness quickly changed to anxiety when I began to think of how I would manage this new life. I was stretched so thin already. In addition to our other young children, my work and my awful c-section pain were sucking the life out of me. I already felt like I was running on fumes. Now this? How? And then I started feeling frustration and anger as I frantically resumed my attempts to reach my sister Jodi. I am blessed with wonderful parents and two sisters. We have always been there for each other. Always. Jodi lived close by. But where was she now? And why on earth was she not answering her phone? Of course, after someone managed to reach her, she came to the hospital that very night with a huge hug and several changes of clothes for both Leo and myself.
Dr. Andre returned to our room and spoke with us for a little while. I don’t remember what he said, but I do remember his kind and patient tone. I was grateful that during our many ward rounds and clinic sessions, I had spent some time addressing the importance of empathy and effective communication with families, especially when relaying a difficult diagnosis. During times like this, it made a huge difference. Then he was called back to the phone to sign out details to the attending in the ICU. I stood close to the door in order to eavesdrop. I just couldn’t help myself. “13 month old male new-onset diabetic in DKA..” I retreated back into the room. It was surreal, this role reversal, this whole experience.
And that, five years ago, was how it all started.