This is the second installment of my “Parent’s Perspective” (written by my mother):
The headaches were so bad that Reddy would cry in pain— for hours. Nothing helped. Not Aspirin. Not Tylenol. Nothing. We felt so helpless not being able to do anything to lift the pain and provide relief for our little boy. I didn’t even know that children could have such bad headaches. Most times the pain would get so bad that he would vomit violently and then get some small measure of relief. Enough to collapse into a retreat of sleep.
When the headaches struck, and they did so often back then, we would sit by Reddy’s bed as he alternated between howling and whimpering from the searing pain in his head. All we could do was watch and hold his hand, careful not to move him which would further exacerbate the pain. And we would pray.
We realized that prayer was the only thing that we could offer Reddy. Prayer for an answer. Prayer for healing. Prayer for comfort. The medications, the endless doctor visits, the steady stream of tests— none of that was helping. Praying with Reddy not only gave him comfort when our own words failed to soothe, but it also gave us an anchor. It was the one thing that we could do when all else was failing us. It was only later that I saw how God was at work all along. There is no such thing as a coincidence.
About a month or so into Reddy’s medical journey, after all the tests and doctor visits and no answers, our pediatric neurologist suggested that Reddy’s “symptoms” were the result of an overactive imagination. I desperately wanted to stop all the testing, the hospital visits and believe that nothing was wrong with Reddy, but I knew in my heart that was not the case.
Months earlier, Reddy’s godfather (a doctor) and godmother had excitedly told us during vacation together (before Reddy’s symptoms were even noticed) about their friend’s wedding that they had attended in Korea. It was a joyous miracle that this wedding even happened and that their friend was able to down the aisle because the previous year had been a medical nightmare.
Their friend had been misdiagnosed time and time again over the course of a year, enduring a stroke and unnecessary medical treatments and procedures. Thankfully, she was finally diagnosed correctly— she just happened to have Moyamoya disease. I think that I heard the name and then promptly forgot it because it had no relevance for me. I was just happy to hear that their friend got surgeries (at Stanford) that saved her life.
So when our friend heard that we had still not found out what was wrong with Reddy, but heard his symptoms which sounded so similar to his friend’s, he suggested that we ask our doctor if Reddy had Moyamoya like their friend. But we told him that he did not. When asked weeks earlier, Reddy’s pediatric neurologist had actually mentioned and ruled out Moyamoya at our first visit when he ran through a list of things that could have caused Reddy’s symptoms and dark spots on his MRI (he never even noticed the “puff of smoke” network of blood vessels that laced his brain— a text book illustration of MM disease).
“Coincidences #2 & #3”
After seeing the almost ten doctors in NYC, the one diagnosis that they all seemed resigned to was that there was a parasite in Reddy’s brain. However, this kind of parasite was typically found in people who ate undercooked pork or lived in the Caribbean— neither of which applied to Reddy. It just did not sound right. But we sent his blood to be tested anyway. Our dear friend (Reddy’s godfather) pressed on and urged us to go to Johns Hopkins where Reddy’s grandfather just happened to be an anesthesiologist to get a second opinion. I didn’t want to subject Reddy to any more poking, prodding, testing and hospital waiting. Thankfully, my husband did not agree and asked his father if he could get an appointment for Reddy. My father-in-law’s friend just happened to be the head of pediatric infectious diseases at Johns Hopkins and he was able to see us the following week.
We had our appointment with the pediatric infectious diseases doctor and he drew more blood to be tested. He told us that it was unlikely that Reddy had this parasite given his lack of risk factors and symptoms. We then asked if he could pass along Reddy’s MRI films to the pediatric neurology department for them to take a look. We did not know where else to go and were desperate for an answer. He told us that he would send the films over but warned that we were not likely to see one of their doctors for months because of their wait unless it was a matter of life and death.
My heart dropped when I received a call just a couple of hours later asking us to come in the next morning to see Dr. Lori Jordan, pediatric neurologist. This was bad news.
Dr. Jordan just happened NOT to be at lunch when the films arrived at the pediatric neurology department. The films could have landed in the hands of any of the other neurologists there, but they just happened to land in Dr. Jordan’s hands— one of our country’s foremost experts on Moyamoya disease.
We were seated with Reddy in her office staring at Reddy’s MRI films. Dr. Jordan pointed to the spindly blood vessels, listed Reddy’s symptoms and told us plainly that Reddy had Moyamoya disease. In fact, the MRI’s showed a “textbook” case.
I felt myself sinking, falling out of my body and watching the whole scene unfold disembodied from myself. I heard Dr. Jordan speaking—Reddy needed surgery immediately. The frequent TIAs were a precursor to a major stroke. We had to do something. But I could not feel. If I let myself feel I would be crying hysterically in disbelief, frightening my son who did not understand what was going on. I knew that I had to be strong for Reddy because we were about to embark on path that I had never expected to go down. This was not the story I imagined for my child.