The stopwatch starts, and I watch as my daughter struggles to use her index finger to guide her way through every sentence of a speed reading assignment. By the time the instructor calls for everyone to stop, she is only a quarter of the way through the exercise. As I sit and watch her struggle, all I want to do is hug her, and tell her how well she is doing–but I know it would offend her. That is because at the time of this scene, my daughter is 20 years old, in a college-level English class.
Robyn, once an independent and voracious reader, now relies on me as her scribe. Like most young women her age, she does not want her mother taking notes for her–but due to a catastrophic medical error, this is our reality.
Robyn Edwards -- What One Medical Error Did To My Daughter
by Robyn’s mother, Veverly Edwards.
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When Robyn was 13, we visited a neurologist for numbing sensations she was experiencing in her limbs. The neurologist informed us that she had a rare form of migraine that caused numbing sensations instead of headaches, and prescribed the drug Zomig. Sure of his diagnosis, he refused to order an MRI. As Robyn’s parent, I requested one anyway–but she never made it to the appointment. On October 4, 2007, Robyn suffered a massive stroke, as a direct result of the Zomig. After the stroke, she was diagnosed with MoyaMoya, a disease which causes occlusion of the carotid arteries. The numbing sensations Robyn was experiencing were not migraines, but mini-strokes. Zomig, as it happens, causes constriction of the arteries–turning her mini-strokes into one catastrophic stroke.
On October 5th, Robyn was airlifted to a children’s hospital 200 miles from our home. Her prognosis was poor. Four days after her arrival after the children’s hospital, the medical team met with my family and informed us that Robyn was brain-dead. I would not accept this. “Ms. Edwards, what do you want me to do?” asked the leading neurosurgeon. I replied, “Give her time.”
Two weeks following the medical error that nearly took her life, Robyn opened her eyes, but was still unconscious. By the end of October, Robyn began making sounds. I ran to one of the nurses and told her I believed Robyn was conscious. She asked Robyn to blink her eyes if she understood her. And then, miraculously, Robyn did. She was finally on her way back.
During this time, I never shared with Robyn the medical team’s prognosis, that she had previously been declared brain-dead, or that Zomig was responsible for her current state. At the moment it was inconsequential–I just wanted her to get better.
I was told that Robyn would never be an honor student again. Her aspirations of running track, playing basketball, practicing piano and drawing were all extinguished. I didn’t know how to tell her that a preventable medical error had robbed her of these dreams. I didn’t know how to say that her doctors predicted she would never get out of bed, when only a year prior she had hoped to attend Yale University. All I could tell her was that we were trusting God–that she needed to work hard, and have faith.
Robyn’s breathing tube was eventually removed and replaced with a tracheostomy. Around a week later, Robyn asked for it to be capped so she could speak clearer, and because she wanted to sing. Once she started singing, she refused to sleep at night. I thought it was because she was so glad to have her voice back, but I was wrong. Robyn confessed to the staff that she was afraid to sleep because she thought she might die.
Navigating through the first weeks of her regaining consciousness was bittersweet. I was thankful for her life, but there was massive damage to her brain and she was suffering from some major deficits. Robyn’s frontal lobe (where the brain filters information and behavior) had been affected. Instead her usual pleasant greetings, Robyn’s words were laced with profanity and she asked direct and inappropriate questions. The medical staff encouraged me not to be concerned, as this was normal for a frontal lobe injury.
I knew that Robyn’s short-term memory had been affected, but her long-term memory was intact. So, I appealed to her to remember everything she was taught about social norms. Before she uttered a word, I requested, she needed to think about it and determine whether or not it was appropriate. I asked the staff to redirect her, and not to accept the behavior as being normal. Soon, Robyn regained control–an early victory.
Robyn’s physical, occupational, and speech therapists were the light of her day. They gave us both much-needed hope. I never set a limit for Robyn, and they understood that we were just going to see how far she could progress. I remember the therapists wheeling her into therapy one day. “Robyn wants to show you something,” they said. They sat her on the bed, and let her go. Robyn sat there for about five seconds before she folded over. She just laughed–she was so excited, and so alive. I smiled, trying to contain myself, but one tear slipped and I wiped it away before she saw it.
As the month of November ended, I had no clue how much longer we would be there. My mom traveled across the country to care for my two sons until Robyn and I could return home. I had no idea when she would be released. My co-workers donated time to me so that I could be with Robyn without my insurance lapsing. My church and community organized a fundraiser to help with expenses. People who heard about Robyn’s ordeal from the newspaper or TV sent me checks. We were so blessed, and I was at peace knowing that we were cared for.
The next major challenge for Robyn was the decision about where to go for the intense therapy program that was needed. Robyn was still very weak, but the rehabilitation team worked diligently to help build her endurance. By the end of December 2007, Robyn was transferred from the Neuro Intensive Care Unit to the Rehabilitation floor at the children’s hospital.
Within the next two months, Robyn made great strides. She began using her right arm and hand again, and regained movement in her right leg as well as some in her left. She regained the core muscle strength needed to control her upper torso, and she was now able to sit up on her own. However, she still was not walking, and had no use of her left hand or arm. Robyn’s processing was slower, and she had short-term memory deficits–nonetheless, we were moving forward.
After approximately five months at the children’s hospital, Robyn was released on February 21st, 2008, and I finally took her home. I had no idea how I was going to care for her. For the most part, she was still completely dependent on me. She could not care for her personal needs–she was in diapers, and she wasn’t walking. However, I was determined to bring her home. Most of the medical team thought I was making a rash decision, and it was suggested that I place her in a long-term care facility. Initially, the nurse case manager was the only one who supported my decision. She informed me, “Ms. Edwards, if you want to take her home, I will help you get her home.” I greatly appreciated that.
The first year home with Robyn proved to be a challenge. One day she was so frustrated during her bath that she exclaimed, “You should have left me at the hospital!”. But we pressed forward. After some helpful suggestions, we sought out water therapy to aid Robyn’s physical rehabilitation, and Robyn began to take steps in water. By late 2008, she was approved for readmission to the children’s hospital for another session of intense physical therapy to assist her in balancing and walking.
In January 2009, my mom returned to live with my boys, and Robyn and I were off again. After a month at the children’s hospital rehab unit, Robyn was balancing and taking steps on her own. When we returned, she continued to work with her therapists, and by the time she entered high school in the fall of 2009 she was walking through her school with the assistance of a leg brace. Robyn retired the wheelchair proudly.
Taking on the responsibility of being my daughter’s caretaker brought with it many challenges for all of us. I had to make a choice: either continue my career, or support my daughter as her caretaker. During this time, we had to give up our home and move into a small apartment. After my oldest son went off to college in the fall of 2009, my youngest son had to quit playing sports because I could no longer afford them or even take him. He assumed more responsibility around the house, cooking and cleaning for us while I took Robyn to therapy.
Thankfully, Robyn has continued to make great strides. She graduated high school in the spring of 2012, and that fall we moved more than 900 miles away for her to attend a special Brain Injury Program at a community college. After graduating that program on time, Robyn started an undergraduate program at a local college, where she is thriving.
A medical error forever changed the course of our lives. The physician responsible for prescribing Zomig never apologized or even checked in on her progress. Like many medical error cases, blame was pointed in many directions but little was ever done to properly correct and learn from the situation. It is horrific enough for a family to lose a loved one or watch a loved one’s life be destroyed by a preventable error, but that it continues to happen day after day, year after year, all across the country should be enough for this nation to demand better.