In the early afternoon hours of a beautiful day in May of 1997, my family life was changed forever, signaled only by the annoying vibration and constant beep as my pager alerted. I was immediately struck with panic as I recognized the number displayed on the screen was the ER of a local hospital near our small East Texas town. The physician in the ER immediately answered my call with a question; “What drugs does your brother take?” I remember being puzzled by this question. Prior to this day, my brother was an average, healthy, 14-year-old boy, who had no medical problems or conditions and was on no medications. The physician sensing my confusion sternly asked a little more precisely; “What illegal drugs has your brother tried?”
"NONE, my brother is a straight A, band nerd, he has never tried drugs, NONE!"
Chris had arrived in the Emergency Room after having suffered a “sudden death episode.” After the ER team had managed to revive him, Chris was flown to a Children’s Medical Center in Dallas and immediately admitted to the ICU. When my mom saw him for the first brief moment she said, “Chris, you have to fight!” He immediately put up both fists like a boxer going into the ring. We took comfort in that little gesture as the hours crept by in slow motion as they ran test, after test, after test. Hours turned into days that seemed like months as we waited for a diagnosis to be announced. In the meantime
doctors placed Chris into a “medical coma” to keep him from fighting the doctors, the tubes, the tests.
Finally, we had a name for the would be assassin. Long QT syndrome was the name of the heart condition that the doctors described as a congenital anomaly. The whole family would need to be tested. Chris was taken off the “medical coma” drugs and we were told to wait…. Wait for him to
“wake up.” I remember expecting it to happen soon, but soon never came. He was transferred from ICU to the floor and it was there that the Neurologist came into the room, with a professional coldness that comes with bad news. He asked everyone to step out except my mom, dad, and step-dad.
I waited not so patiently outside. My stepdad came out looking at the ground, shaking his head, slowly walking away. I followed, “what, what is it?” His response was simple, “what you see is what you get.” Basically, in a nut shell, the neurologist indicated that Chris would never wake up, never eat,
never walk, always be in a bed, in a diaper, and would have no quality of life.
I couldn’t believe it, I refused to believe it. I left the hospital immediately. I drove to Medical City Hospital to visit The Neurological Clinic of Texas. I met with Dr. Naardan, one of the TOP neurologists. “April, we don’t know that he can’t hear us and I believe he can. ALWAYS be positive in front of him,
do not speak ill of him. Do not ever talk about what he can’t do or won’t be able to do.” He told me to crawl in bed with him, talk to him, read to him, joke with him, and just treat him like a brother and get an official second opinion.
The second opinion we got was just as gloomy. The doc indicated that Chris’s EEG showed no brain functioning and that we should discontinue the TPN (food in the vein) and if it were him, he would not recommend a G-button. (A surgery that Chris was scheduled to have the next day) His prognosis was “persistent vegetative state.” He further recommended that we discontinue feeding him and go ahead and “let him go” I wanted clarification, so I asked that tough question, “So you want us to starve him to death?” He didn’t say, “Yes” in so many words, his response was more politically correct…. “You are in denial right now; he will have no quality of life if you continue feeding him.” We inserted the G-button the next day.
He was shortly discharged and transferred to another hospital where he was an inpatient there for a few months. Every day was a fight, some new obstacle or pessimistic comment from medical staff. Then therapy started, physical therapy, occupational therapy, speech therapy every day. Chris’s friends made a huge banner that was taped to his ceiling above his bed. As he started to become more aware of his surroundings, he started tracking that sign and then tracking voices and day by day began to get more and more alert-although he rarely made eye contact.
As therapies began to increase, Chris became weaker and weaker. He was only being feed liquid medical food through his G-button. He began to lose weight and started to look very sick. His color was pale, his eyes were sunken in his head and he generally had a very sick look about him. My mother asked the nutritionist if she could begin to incorporate fruits and vegetables into his G-button. They said no. She asked again… they denied again. Finally she brought in a juicer and began juicing vegetables that I had never heard of, things like Kale, Bok Choy, and arugula, not to mention all the usual stuff too. That food was the nastiest smelling stuff you ever smelled, but against all odds, EEG results, and medical advice, he began to improve. He was more awake, more alert and had more strength than ever before. He began to regain color and started to look much more hydrated. It was amazing. Prior to the stinky veggies, when he was in an upright position, he could not hold up his head. Soon after the veggies were started, he became strong enough to hold up his head and look directly in our eyes.
As time went by our family made the decisions that we believed were right for us and fit with our optimistic view of what Chris’s life could be. We dared to dream with him for the best possible outcome. Then one day we went for our regular walk outside down the street to a Jack-in-the-Box, but that day was different. I pretended to arm wrestle with him, putting his hand in mine and back and forth I went. Eventually I helped him pin me, then exclaimed, “dude, even in this state, you can whoop me!” He grinned! from ear to ear, he grinned. It was the first time since the fists in the air when mom told him to fight that he showed any normal cognition. That day changed my life and his.
Fast forward 12 years later. Chris is still in a wheel chair mostly. He can transfer himself from his wheel chair, he can feed himself, he can speak, and even walks with a walker or with assistance. I would love to tell you that Chris is 100% normal, but that would be inaccurate for two reasons. One when you are lucky enough to survive a sudden death episode at fourteen, there tends to be lifelong physical challenges that go right along with that. Second is that he is part of my family which has made a habit out of not being normal. Our doctors said he couldn’t, he won’t, he can’t and we said he could, he will, he is. Don’t be normal! Be stubborn, and never, ever, ever give up! Chris didn’t and neither did we. If you ask Chris, he would say he has a better life than us!
The Chris Tanner Story
Written by April Shirley
Note from the Editor:
“It was one of the greatest joys of my life to walk with April and Chris at the (March for Respect 2009)” L. Polvado