On Friday, my son Brady finally had an MRI done on his brain. It is the first step in closing the circle that began almost four years ago to the day. It is another step in finding answers on a journey that began four years ago. It was a scary day. It was a good day. It was a day that told me so much about my remarkable little boy, and how far we have come, while still standing in the exact same place we were four years ago.
Four years ago, I was several months pregnant, sitting in a MRI tube. A few weeks earlier, I had my 19 week ultrasound and all the anticipation that goes along with the "big ultrasound" had been dashed when the technician excused herself to find a doctor and the doctor had told us their was "an abnormality." The images of my newly revealed little boy's brain were cloudy and hard to read with 100% accuracy, but they were clear enough to show that something was not quite right. The doctors, after 3 ultrasounds, including a 3-D ultrasound, were unable to see the corpus callosum. A big scary term. Technical words that were so foreign to us. A diagnosis that led to sympathetic eyes from the doctor and discussions of "our options" from the medical professionals trying to console us.
Essentially, the corpus callosum is the part of the brain that connects the two hemispheres of the brain. Of course, my husband and I googled the term, the minute we got home from the hospital. We learned that the corpus callosum can be partially missing, or fully gone. It can cause very little complications and people can live very typical lives, or people can suffer developmental delays, cognitive impairment, difficulty with concentration and verbal language delays. It can cause little problems or it can cause very big problems. My OB tried to reassure me that a missing corpus callosum could be something we didn't even notice. He told me a story of a good friend of his who is a neurologist. The friend was in a motorcycle accident and had a MRI done due to some injuries. When the MRI was taken, it was discovered he was missing his corpus callosum. He never knew it and never would have known it, but for the accident. I felt a huge sigh of relief hearing this story. I let myself believe everything would be fine with my little boy...perfectly "normal." I also clung to the docotor's initial statement to us during the ultrasound, that our son was "possibly" missing part of his corpus callosum. We listened to what we wanted, we believed what we needed to believe.
A few weeks after all the ultrasounds, we were told we should have a prenatal MRI done on our son....our Brady. The specialists felt a prenatal MRI could give them a clearer picture of the brain structure and give us a more definite answer. It was our choice. My husband and I spent a few days weighing the pros and cons of the prenatal MRI. What would we do with the information? What would change if the answers were clearer? How would we feel if we knew more? Would anything change? These were challenging questions for us, because we were the couple that never did prenatal testing, because we always believed nothing would change the way we felt about our child if something was abnormal or "special." In the end, we chose to do the prenatal MRI. I think we chose to do it because we were hoping all the ultrasounds were wrong. We were praying there was a mistake.
In March of 2008, I laid down in the MRI tube, tried to relax, tried to fit my pregnant belly in a very tight fit and tried to think good thoughts while I lay perfectly still. I willed myself not to move as images of my little boy's brain were taken, one after another. My husband stayed behind the windows and watched the images pop up along with the doctors. He watched in awe as he saw image after image of his unborn son's tiny brain. He felt hope as he could see the different shapes of each part of the brain appear on the screens. The doctors thought it was possible that the corpus callosum could be intact, but with Brady still wiggly and moving inside my growing belly, they would not be able to confirm a diagnosis either way, until Brady was born and a MRI could be done.
So we waited. We waited until June 10th, when Brady unexpectedly arrived a few weeks early. We held our breath and hoped that all the worry, all the endless nights googling corpus callosum and all the fear, would disappear with his arrival. But as most of you already know, Brady arrived into this world with a whole host of other struggles that replaced our initial worries. Brady's health crisis and multiple surgeries, left no room for MRIs. It would be years before we could even entertain putting him under anesthesia for a test that was not meant to immediately improve his health. Over the years, Brady has been put under with anesthesia for many surgeries. He has always struggled with coming out of the anesthesia. He has needed oxygen. He has spent hours, and even overnight stays, for simple procedures because he has had oxygen saturation's that have shown a struggle to breath. He has been lethargic and scary weak. His hypotonic body has been so weak and floppy, you were afraid you would break him. We have come to dread any procedure that requires anesthesia.
We have seen four neurologists in three years. Each wanted a MRI done on Brady. No one can make a diagnosis or give us a prediction for the future, without the facts in front of them. We knew we had to have the MRI done. There was always a reason we postponed the test. But this past January, Brady's new neurologist called and requested we have a MRI done. My husband and I debated scheduling the test for days. There were so many cons. There was the picture in our minds of our son, so weak and scared after every procedure. We asked if the MRI could be done without anesthesia-but we knew the answer would be no because Brady would never lay still enough to have the images taken. Finally, we decided it was time. It was time to get some answers. It was time to trust that Brady was stronger. It was time to move forward with whatever the future holds.
This past Friday, early in the morning, we took our sleepy little boy down to Children's Hospital in Detroit. Due to his recent type 1 diabetes diagnosis, he was given the first appointment of the day. We shared our concerns, over and over, with the anesthesiologist. We had our bags packed in the car and had even remembered a cell phone charger, just in case an overnight stay was required. We were no longer rookies. We knew what to expect when Brady came back to recovery. We prepared ourselves for the worst. We waited for the deafening beeps of the pulse ox monitor. We assumed a long day and night was ahead of us. As my husband and I stood huddled together in the cramped recovery room, we held our breath as the nurses wheeled a blond little boy across the room and to our utter surprise, the little boy sitting up on the gurney was our Brady. No oxygen tube, no beeping monitors, no listless little boy...just a fussy toddler whose face lit up when he saw his anxious parents. He was ok. He was strong. He was ready to go home, and so were we.
It sounds a little silly, but I was so proud of my son. I was proud that he had grown so much stronger and was able to tolerate simple procedures. I was proud that he could sit up tall and shows us he was ok. I knew in that moment that we had made the right decision finally having the MRI done. I knew that it was time to find the answers, whether they were what we wanted to hear or not, because my little boy deserves the best care he can get and without answers, it is so challenging to know what that care should be. Of course, we know nothing about Brady's development has been "typical". We know in our heart, he is missing his corpus callosum, most likely due to his duplication on his first chromosome. But until we really hear that, there is still a sense that everything in his brain has developed typically and things will be "ok." On Thursday, we meet with our neurologist and the results will be interpreted and given to us. Regardless of those results, it is time to move on, get the facts and take what we learn and continue to help our little boy reach his fullest potential. It is time to close the circle we started four years ago.