TITLE: Our Doctor's Perspective
By Anne Harrell
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Our Doctor’s Perspective
God was gracious to give us a precious relationship with Cyndy’s doctor, Dr. Larry E. White. Dr White started seeing Cyndy in the middle of 1988. Cyndy loved Dr. White dearly because he took such a personal interest in her and our entire family, much like a father. As a former nurse, I have seen very few doctors exhibit the level of concern that Dr. White had for Cyndy. Most doctors tend to be very clinical and detached from their patients, almost for their own emotional protection. However, Dr. White was unique in his vulnerability with us.
As I shared my idea for this book about Cyndy, Dr. White once told me that he wished “parents would realize that doctors have feelings, too. They hurt just like parents do over the loss of a patient.” Dr. White was not afraid to show his emotions or be truly involved in our lives. He continues to be a good friend, a very meek person with a big heart.
I did not realize at the time Dr. White’s tenderness and sacrificial love for us. Our relationship continued to grow even after Cyndy’s death. Dr. White formed a bond with Cyndy, and this bond exists with our family to this day. Now I will step aside and Dr. White tell his point of view in his own words:
I have been a doctor for almost thirty years, and almost all of that time has been devoted to treating children. I’ve spent twenty years treating children with neuralgic conditions, and during that period, I would have to say that I’ve seen almost every conceivable type of reaction to, adjustment to, recovery from, and progression of neuralgic injury and illness.
When people think about sickness and injury, they think in terms of getting well and how long it’s going to take them (or their friend or loved one) to recover. As a physician, it is my calling and my duty to help them do that; there are times that I do a great deal for them and with them, and there are also times I can do very little, at least medically speaking. This can be very difficult on the parents and siblings, not to mention the patient, and everyone has different ways of dealing with the stress. A very important thing to remember is that people with injury to the nervous system often have to deal with quality of life issues, as well as living or dying. As care providers and caregivers, we may have a very different idea of what matters most to the patient, and vice-versa. Add to that the communication gap that exists between ages, genders and cultures, and I hope that people can appreciate the size and number of “potholes” that exist in a person’s road to recovery, as well as just surviving daily life.
Doctors, being people, have a wide range of interests and styles, and I wish sometimes that we could all be like the stereotypes on television that can solve murders in an hour, make house calls anywhere in a large city and still have time for an office practice, carry thousands of dollars in cash around a large city at night, or have expertise in multiple specialties including surgery and pathology (while working for the FBI). The role of doctors in the health care system is changing, and as more science and technology fill the hours of our day and the expectations to see more people in less time becomes an insurer-driven reality, we are fighting a “case” driven wave that threatens to dehumanize the most human of qualities-- taking care of one another in body and spirit.
As a doctor, my particular style has been, while acknowledging the bad things that happen and may continue to happen, to emphasize the positive, and work as best I can for a better tomorrow. We all know that the deeper the “hole” of illness is, the harder it is to climb out; I push my patients to climb as hard as they can while avoiding things that would enlarge the hole. And while that sounds simple and straightforward, we all know that the reality is vastly different. Doctors that have practiced for a while have all seen people get better from illness, fight hard and long but succumb, cope with tragedy, deal with adversity, grieve, hope, pray, and resolve. I am sure that other docs like me, even though we’ve treated thousands of people, have those patients and families that are “special.”
By that I don’t infer that they are any better than anyone else or necessarily that their problem was rarer or more serious, but that the relationship between us was such that the mere mention of their name elicits a flood of memories and emotional ups and downs so thick that, like a fog or a snowstorm, you try to wipe it away from your face. I have certainly treated “special” children. Like Cyndy.
Cyndy and I first met in the hospital, during one of her many bouts with increased seizures that needed observation and often adjustments of her medications. I had just gotten out of the military and returned to the Tidewater area, which I grew to consider home during my stay here as a general pediatrician, so I was trying to get used to the role as a consultant. Consulting physicians answer questions and give advice, while attending physicians provide the care to the patient, so I wanted to make sure that even though I may only see her one time, I wanted to give the best recommendations possible; her pediatricians, of course, were a fantastic group of caring and capable doctors who treated her for years and knew her well.
As I began reviewing her story, it was clear that adversity should have been Cyndy’s middle name. Her mom’s pregnancy was anything but ideal, with her twin dying after only two months and the rest of the pregnancy marked by bleeding, attempted miscarriage, anxiety, and uncertainty. Cyndy’s birth was not the smoothest transition into the real world either, with her aspirating amniotic fluid into her lungs and needing breathing support for a while, but after a brief course of antibiotics she was ready to go home as if everything was perfect—this rapid turnaround and rebound from whatever adversity came along followed her throughout her entire life.
I got involved with Cyndy after her seizures worsened considerably, but it wasn’t always that way. Her first few months of life were uneventful, but after her first few well-baby exams, there was concern that her head and brain weren’t growing as well as they should be. Before her first birthday, she had several episodes of convulsions associated with fever. Even though these seizures were with a high fever, her doctors were all sure that she had a serious underlying brain problem and that these weren’t just “febrile” seizures. However, both Phenobarbital and Dilantin were not controlling them, and Tegretol was added without a lot of benefit. EEG studies here had not shown a persistent abnormality.
By the time she was fifteen months old, Cyndy was on three seizure medications that weren’t working very well, and her family took her to the Spitz Institute in Pennsylvania, where EEG studies confirmed a diffuse generalized seizure focus. Tests including brain scans and metabolic tests on blood and urine didn’t isolate any particular cause. However, the information did help direct our medications and we began a new combination including both Depakene and Mysoline--medications that are certainly potent but also quite risky to children of her age. Her seizures stabilized for months, but then over time it became obvious she needed a new medication--but what?
Fortunately, for Cyndy, our institution was one of a few studying a new drug called Mogadon; it was in the class of medications that Valium and Ativan were, but designed for day-to-day control of seizures rather than emergency treatment. It was being tested on children only with certain seizure types and the restrictions were great. However, Cyndy qualified and her parents jumped at the chance to try something new. This is where I came in, first treating her in the hospital and then looking after Cyndy after Dr. Enrique Chaves, her neurologist since her infancy, left the area. Getting her on Mogadon was the best thing we ever did, as for a long time it was, and had to be, her “Miracle Drug.”
Every neurologist who treats seizures, especially the kind that Cyndy had wishes that they could find that special medication that is “lightning in a bottle.” Mogadon wasn’t that, but it was close. Within weeks of starting it, she had a major problem with her platelet count and her hemoglobin levels dropping, rather abruptly, and having to hospitalize her again. Fortunately, it was one of those times where, like cancer patients, her blood tests looked awful but she looked good, and after we stopped both her Tegretol and Depakene, they came back up. With the Mogadon we had the luxury of stopping medications rather than trying to guess which one it was, how much to back off and when, or worry about things getting really bad while we are deciding. Just as she did as a baby, Cyndy had a way of shrugging off catastrophe and going on with her life—the next year and change was arguably the best times of her life.
For the next year, we were able to watch Cyndy grow and develop a bit. Further investigations into why her brain didn’t develop properly disclosed no evidence of a degenerative disorder, a genetic syndrome, or other problem. The genetic aspect became very important as her two brothers got older and showed a slowly growing head and autistic spectrum disorder but without the seizures, and all three children developed behavior problems that needed medication for control. Since she was on an investigational medication, we were getting blood tests so often that she got used to them, which was a relief. After a year or so, very subtle seizures caused us to push her medication level of Mogadon up and up. Since the seizures were “drop” seizures and Cyndy had remarkable ways of slipping out of her helmet, some increases led to others because it was clear that she was getting used to the Mogadon. Once the dose reached the maximum under the study design, we had to try others. She still had a tendency to have rather scary seizures with high fevers, and on occasion when her fevers reached 105-106°F, there was concern that the fevers themselves may be doing some harm.
Close to her fifth birthday, she had another close call that no one could have predicted. There was a brief shortage of Mogadon to study patients due to a manufacturing problem, and even though we tapered the dose slightly prior to running out and used every other cousin to it that we had including Valium and Ativan; she was scaring the nurses with her seizure clusters. Despite it all, though, Cyndy never needed the ICU other than for observation, and after things settled down she would give you that look of hers that communicated without words that whatever came along, she would beat it and get up out of her bed, toddling along next to me with all the grace of Bambi on ice.
I have always heard the saying God does not give you more then you can handle as in 1Cor. 10:13 “No temptation has overtaken you that is not common to man. God is faithful, and he will not let you be tempted beyond your ability, but with the temptation he will also provide the way of escape, that you may be able to endure it.” This has given Mark and Anne the grace to carry on and should be comforting to them to know that God will not put any more burden then they can handle. I am always telling Mark and Anne to hang in there, James 1:2-4 mentions perseverance. Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be perfect and complete, lacking in nothing.
The following years were touch and go at times, depending on how sick she would get. I thought her pediatricians were very clever to treat Cyndy with preventative antibiotics during the winter, a tactic that certainly is not recommended for everyone. With Mogadon as her mainstay, we added other medications when she would have increased seizures not triggered by illness. We did not play favorites, adding Tegretol back at one point, new medications Felbatol and Lamictal and some old ones including the dreaded Valproate, which with her age we knew she could tolerate—we were right. Cyndy gave us a scare just after her sixth birthday when she was found in her bed blue one morning, and the questions came fast: Did she have a seizure and aspirate and partially obstruct her airway? Did she have a “near miss” SUDS episode, which is a sad phenomenon occurring in epileptic patients when they die unexpectedly in their sleep presumably from a seizure? Did she have a spasm of her airway as part of a seizure? Did someone in the house try to smother her? Cyndy looked as unconcerned as usual and when she spiked a fever the next day to 105°F without evidence of aspiration, we were wondering if in fact all the events were related to an illness that was working through her. This affected the way everyone dealt with her from then on, and every time she did something unusual, she was treated for infection first.
During her times of relative health, she actually had some time to enjoy school, church and other stuff like any other child. I don’t think that not talking or walking that well bothered her, and she would always get up off the ground even after seizures, falls and accidents put her there. Despite the problems she had, Cyndy exhibited an air of enthusiasm about just “being here” that was uplifting and at times inspiring to watch. Maybe it was because she wasn’t capable of thinking and acting the way “normal” people do, but for whatever reason she got the most out of what she had.
Cyndy’s tenth birthday was a day of celebration and, for me, a time of reflection. Some people hadn’t given her a chance to make it one year, much less ten and we at times were thinking ahead to adjustments in her schooling. But I was troubled by some changes in her muscle tone which had gotten tighter and had led to surgical intervention by the orthopedists, first at age nine and then again just before her eleventh birthday—all our splinting, cables and therapy could not prevent worsening of her walking. While she was still having seizures, we didn’t have to put her in the hospital as often. Mogadon had become an orphan drug; the study that Cyndy was a part of did not convince the FDA enough to approve it. The drug company was very gracious about continuing it in children that had shown a good response, but we all realized that that situation would not last forever and the memory of years past when the supply got low and ran out briefly was still vivid. Another thing that worried me was that Cyndy seemed to get sick a little easier that when she was younger. After she had her surgery she had developed pneumonia from aspiration, and it seemed that she was developing fevers more frequently, and fever was one thing that had always triggered her seizures. Changing her seizure medications around had included adding two new medications and trying to decrease the Mogadon a little, hoping that perhaps she was metabolizing it differently than when she was little. Other treatments such as the special ketogenic diet and seizure surgery were not good options, and the newer medications that we use now in 2004 weren’t available. Fearing that she may have some worsening disorder, we repeated tests looking for “storage” diseases and found nothing. I found myself warning the parents to be extra careful during the winter months, which are a time that neurologists like myself; worry, usually silently, about the effects of the nasty flu and other infections that can be catastrophic to our disabled population.
When I heard that Cyndy had been found dead in her bed, it revived memories of the near miss events she had had years earlier, and raised all the questions that we had sorted through before. Had she been sick? Was it SUDS? Aspiration? Smothering? We had been checking blood levels and blood tests and they were acceptable, she hadn’t had any fevers, and I knew that her family had been watchful. Over the years, I had begun following her brothers as well, and we had welcomed three new Harrells—I knew the family would be devastated. Her funeral was as stressful as I knew it would be, and I was worried about the mental health of her mom. As I met family members and church members, I noticed that all her pediatric doctors were there, and they wanted to do something for her that I had not seen nor heard of until then—we all served as her pallbearers. Of the few memories I have of that day, the most vivid one is how heavy that coffin was—Cyndy had always been so light to carry; no trouble at all, really.
In spite of all that grief that day, I tried to look on the positive side. I believe that in the hereafter I will meet every person I have taken care of that has gone before me and that they will know by seeing into my heart that without exception I always did my very best for them--anything less would not be right for them or for me. So for me, guilt and suspicion had to give way to faith and hope. I knew that in the sweet bye-and-bye Cyndy was talking up a storm, running all over the place without falling, and basically having the time of her afterlife. Joshua 1:9
Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go."
Therefore, I knew she was just fine, but she had a family that was not. Her passing had left a hole that would probably never be completely fixed—but no one knew that what would happen next would literally drive a tank through it.
I first heard about social services removing the rest of the children from Dr. Garrison, Cyndy’s pediatrician for years and a fantastic person. Obviously, I was in disbelief. Child abuse and neglect is an unfortunate reality in today’s world, and I see evidence of it literally every day. But here? This family? Once again all those scenarios of Cyndy’s last night came rushing back, punctuated by the inquiries and questions from the social service investigators, which had to be tough and blunt. Did I know this? Was I aware of that? But an important fact was that a blood level of Mogadon I had obtained just days before Cyndy’s death was ten to fifteen times the limit of normal, even four times the high levels that we had recorded when we were pushing her doses up when she was younger. How could this be?
Obviously, the coroner was involved, and I fielded a lot of inquiries from her as well. I was obviously hoping that no evidence of foul play would be found, and that after rechecking postmortem blood levels and rechecking the blood tests in question, the abnormally high level would be a mistake. Over the years, I have been right sometimes and wrong sometimes; I’m a doctor, not a profiler. This time, though, I was right. The high blood level was a mistake, and there was no evidence of foul play. Now, hopefully, the family could begin to grieve, cope, and move on.
It’s been a long seven years since then, and many things have happened to mom, dad, brothers, and sister. As I type this, it would have been Cyndy’s nineteenth birthday. These few words of mine are a promise I made to her mom to do whatever I could do to help her get over her grief. I keep my promises.
When you think about it, there is probably a Cyndy in every family, if you look back far enough in time. Every life, long and short, does touch many others, and we could all learn so much from each other if we were receptive and willing. I am still close to her family, and I treat all her brothers and sister, and they all have their stories to tell. Despite their problems, their parents and I and many other people are working hard to help them enter adult life with happiness instead of anger, hope instead of frustration, and an eagerness to live for themselves and others. Time will tell if we are successful.
But Cyndy—she was special. She disproved the naysayers, taught myself and her other doctors some things, and reminded all of us that happiness is not an absolute but depends on your frame of reference. To paraphrase my grandfather, she got a great ride for her nickel. So play long and play hard, my angel.
Cyndy had her disabilities; she had her way of brighten people lives with her smiles and hugs and was use by God to bring glory and honor to Himself. God sure use this special child in many ways. John 9:1-5 as he passed by, he saw a man blind from birth. And his disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be displayed in him. We must work the works of him who sent me while it is day; night is coming, when no one can work. As long as I am in the world, I am the light of the world."
With me being a doctor I happen to like Luke since he was a doctor another scripture I like is Luke 5:18-20 (ESV)
And behold, some men were bringing on a bed a man who was paralyzed, and they were seeking to bring him in and lay him before Jesus, but finding no way to bring him in, because of the crowd, they went up on the roof and let him down with his bed through the tiles into the midst before Jesus. And when he saw their faith, he said, "Man, your sins are forgiven you."
Yes Dr White, you will see your angel again some day. Again thank you Dr White for being the Doctor and friend you have been. God has sure blessed us with knowing you.
Thank you Lord for given our doctors wisdom for knowing how to take care of our families and us. Thank you for all the doctors out there that is like Dr White who loves you and wants to do your will.
In Christ, Amen
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