Tuesday, April 5, 2011

THE BOY WITH NO NAME

We had already seen over thirty patients in the sweltering afternoon heat, and the long line of people continued down the dim hallway and into the stairwell. In the adjacent open ward, children, sometimes two or three per bed, were packed together with only small shifting channels between beds that widened and narrowed as nurses and families scraped by. My friend and colleague Dr. Ena Miller and I were seeing outpatients at the public hospital in Honduras. The neurosurgery clinic consisted of a tiny glass-walled room sandwiched between the pediatric ward and hallway that doubled as a nurse’s station. The clinic contained an examination table covered in torn brown vinyl and a dented gray metal desk with missing drawers and unhinged doors. The glass between the clinic, hall, and ward was only partly covered by thin, faded Winnie-the-Pooh curtains, and the door to the exam room would not close completely. A young mother caught her breath and clutched her newborn after my gentle wordless examination. The mother’s hair was pulled tight back, high-cheeked face and cupid’s bow mouth over rounded belly still swollen from her recent pregnancy and delivery; The infant lolled in red crocheted booties with satin ribbons dangling from toneless feet and legs, the curve of the ribbons followed the curve of the legs in a macabre echo. “Yes, the baby would need surgery to repair the sore on her back and another to drain the fluid from her head into her abdomen. No, she would not be able to walk,” Ena explained carefully. Crinkly carbon copies smelled sour as Ena wrote out a shunt prescription for the red-bootied baby. Though the window to the ward I watched a thin, somber woman standing firm beside her son’s crib, rhythmically squeezing the ambu bag that filled and refilled his limp little lungs. That woman had been standing just as she was now each time I had been on the ward, twice daily, for the past two weeks. As I entered the hallway to call for the next patient, a small, skinny boy I judged to be about eight years old darted past me and into the exam room. His rust-colored hair was short and crinkly, his scalp crisscrossed with scars. He clutched a green plastic bottle of Sprite. I recognized scars from craniotomies, and I recognized scars from other things. “Doctura, I have a terrible headache.” said the boy. “My head, it is hurting terribly, please Doctura, I think my shunt is not working, please admit me to the hospital.” The boy was well-known to Ena, who explained to me in English that he was about 18 years old and had hydrocephalus and a shunt. He had been coming to the hospital since he was an infant and required emergency surgery to remove a subdural hematoma sustained at the hands of an abusive father. He had many craniotomies through the years for similar injuries as well as multiple shunts and shunt revisions for post-hemorrhagic hydrocephalus. Ena and I examined the boy, and although the refill on his shunt valve was a little slow, we found no clear evidence of shunt malfunction. Ena reached toward the prescription pad to order an outpatient CT. The boy began again, pleading in earnest, eyeing me hopefully, and in English adding: “My father beats me. My father beats me on my head.” Switching back to Spanish he added, “I don’t want to go home. Please find me a place in the hospital today.” Ena explained she could not admit him with only a headache, and offered again to obtain a CT scan. The boy refused, backing sadly into the crowd and repeating “La Doctura, por favor, por favor.” “What is his name?” I asked, contemplating adoption and what my husband would say if I returned home with this boy in tow. “I don’t remember.” Ena said, sifting through a stack of files on the desk, looking for his record. She did not find one, so she asked a nurse to help. “He has no name.” the nurse replied. I tilted my head and Ena arched her brow. “He has no name.” she repeated. “His mother and then the boy use no name to hide him from his father. I do not think he has a name.” When a trauma patient arrives in a United States Healthcare Facility without identification, the patient is typically given a temporary name such as “John Doe.” The patient is further assigned an obviously incorrect date of birth, such as “January 32, 1826,” so that the patient can be registered and emergency labs, scans and procedures accomplished until the patient’s true identity and birth date can be determined. Sometimes victims of violence are also assigned temporary aliases by a hospital to offer some protection from those outside the hospital who would do them further harm. In Honduras, these conventions simply do not exist. I called for the next patient and a petite young nun with a salmon pink wimple and habit came, bearing an infant with a myelomeningocele, a saggital synostosis, and a sacral decubitus ulcer. The nun was from the local orphanage. This infant had been abandoned at the hospital a few months earlier by his family, and the nuns had taken him in. Although profoundly disabled, the infant was smiling and clean the nun tender and devoted. I remarked on the infant’s polish and Ena described the orphanage: how spotless and well organized it was, how there were hundreds of such children there, all pampered and protected by the pink-clad nuns. As Ena crafted a foam donut and instructed the nun on the care of the infant’s ulcer, I noticed the first boy again hovering nearby, still holding the bottle of sprite, watching and listening. We completed the infant’s visit, and the nun deftly picked up the baby to return to the orphanage. As she crossed the exam room threshold with the baby in her arms, she paused and gazed steadily at the boy with no name. She nodded once, and then motioned for him to accompany her. He did. They walked down the hallway together, light from the low sun glancing off the linoleum, briefly illuminating this strange new family with golden light.

Tuesday, January 11, 2011

Honduras Stories: Angels and Vultures Part 2

This blogpost continues my story about "Enrique", one year later...


Part 2. November, 2010: CAMO, Hospital Occidente, Santa Rosa de Copan, Honduras.

The little boy scooted happily across the exam table, laughing in the morning sun. His large brown eyes sparkled with intelligence and curiosity as he listened through the stethoscope and pulled at the curtains and tried to taste the reflex hammer. Less thrilled with examination of his shunt, he retreated to his mother’s arms for a few beats, but the retreat soon evolved into a game of peek-a-boo, followed by more investigation and exploration. His pretty young mother kept her gaze always on her son.

Dr. Alvarez and I were seeing outpatients in the clinic at Hospital Occidente. Most of the patients we had seen in follow - up that morning were doing reasonably well, but this little boy was fantastic. He had a history of a shunt for hydrocephalus, but his head circumference was now normal. His neurologic examination revealed only mild weakness in the legs and feet, corresponding to his congenital disorder. All other developmental milestones were perfectly on target, and his cognitive development was excellent.

“Wow, Roberto, nice job! This little guy looks great,” I exclaimed.

Dr. Alvarez grinned broadly, flipped to a page in the chart, and pointed to a small white rectangular sticker. The page was the operative record, and the sticker was the implant record from the shunt that was placed. On the sticker was printed: “Integra,” along with a reference and lot number, model number, description, and a box for the patient’s name and a date.

“He has one of the shunts you brought last year,” Dr. Alvarez said.

I smiled and glanced down at the sticker, then froze as I read and re-read the patient’s name and date. Impossible.

“What is wrong, Dr. Denise? Are you OK?” Roberto said as I turned the pages until welling tears blurred my vision to the point I could not read any more.

“This is the boy with the Perinaud’s….” I said, voice catching as I steadied myself.

Frowning in confusion, Roberto said “Pardon me? Did you say Perinaud’s? I do not think this boy has Perinaud’s.”

It was my turn to grin broadly, as I explained how I remembered this boy from the previous year and how I assumed he must have died.

Enrique’s [not his real name] mother, who had kept her gaze her vigorous son, looked up, caught my eye, and beamed. Her recognition confirmed the medical record. Enrique lunged for her necklace, which bore a small golden figure with wings. I remembered the dark wings outside this boy’s window last year and marveled at the transformation. As she shifted to evade his chubby fingers, the necklace caught the light: An angel. He had been surrounded by angels all along, I just hadn’t recognized them. They were "CAMOflaged".


Epilogue

“Where you live in the world shouldn’t determine whether you live in the world.”
- Bono

Through CAMO’s unique program of need-based aid, careful developmental planning, accountability, documentation, and follow up, donations make a tremendous positive difference. In Enrique’s case, CAMO programs and donations made the difference not just between living and dying, but between severe disability and good health. I have summarized only the first and most recent chapters of Enrique’s story. His first few months after the shunt were touch-and-go, but because he received ongoing care and follow-up through CAMO’s neurosurgery program, he not only survived, but thrived.

Monday, January 3, 2011

Honduras Stories: Angels and Vultures Part 1

In 2006 I made the first of several trips to Honduras to volunteer in hospitals there. My intitial trip was associated with the Foundation for International Education in Neurolical Surgery (FIENS). Subsequent trips were in support of the wonderful work that Central American Medical Outreach (CAMO) is doing in Honduras. My most recent trip was in November 2010, but before I get to that trip... Here is Part 1 of an story that motivates my continued interest in helping those that need it most.

Part I. November, 2009: CAMO, Hospital Occidente, Santa Rosa de Copan, Honduras.

The neonatal ward was bright, hot, and crowded. Young mothers with tired eyes hovered by their infants while doctors and nurses moved methodically between them. Outside large windows, vultures hopped and jostled along the gutter, eyeing the potential banquet within.

Enrique [not his real name] lay listless in a crib by the far wall. Two months old, his head was grotesquely swollen and still, the scalp stretched taught and shiny. His tiny arms and legs splayed froglike and oddly wrinkled, like a balloon person my father made me when I was a child after the torso and limbs mostly deflated. His eyes were open, but heartbreakingly blank white, with thin rims of iris peeking above the lower lids.

“Hydrocephalus” literally means “water head,” and occurs when clear cerebrospinal fluid continuously produced in the fluid chambers or ventricles of the brain is unable to drain and be reabsorbed. The fluid builds up, causing the ventricles to enlarge, increasing pressure inside the head and compressing the brain from within. In infants, whose skull bones have not yet fully formed and fused together, hydrocephalus produces head enlargement. Because the eyes, along with the nerves that control things like swallowing and breathing, are direct extensions of the brain, blindness, malnutrition, and pneumonia soon follow, often resulting in a slow and agonizing death.

I had treated children with hydrocephalus many times before, both in Honduras and in the United States, but Enrique’s hydrocephalus was far advanced. The eye abnormality, called Perinaud’s phenomenon or “sun downing” is a sign of severe, rapidly building pressure deep in the brain. This was my fourth visit to Central America as a volunteer neurosurgeon, yet I had not seen a case like this in years, and realized most of my medical students back in the United States never would.

“He has been waiting for you,” Dr. Roberto Alvarez, my Honduran neurosurgical colleague, said as I photographed the child.

“And they for him,” I said as I also photographed the big bald birds outside.

“I think they will continue to wait,” Roberto replied.

“I hope so,” I said, thinking that the vultures, which I had never seen so close and eager before, perhaps knew something we didn’t. Did they know this child was too far gone for us to help? Enrique’s mother studied me intently, looked out at the dark vultures, and curved protectively over her son. I kept my thoughts to myself.

As devastating and horrible a condition as hydrocephalus can be, the best treatments are relatively simple: either remove the cause of the hydrocephalus, as when removing a brain tumor that obstructs normal drainage pathways, or drain the cerebrospinal fluid to a place where it can be reabsorbed, as in placing a shunt. Shunts are implantable devices that basically consist of a valve between two thin flexible catheters, one to drain the brain ventricles and another to divert the fluid beneath the skin and into the peritoneal cavity (the space around the stomach and intestines in the abdomen). Available in the developed world since the 1960s, shunting for hydrocephalus is one of the great neurosurgical triumphs of the 20th century. The procedure typically takes less than an hour, and is so safe and effective that severe hydrocephalus such as Enrique’s has become a rarity in the United States.

In the developing world, such cases are unfortunately very common, with thousands of children in western Honduras alone suffering permanent brain damage or slow death each year as a consequence. However elegant or simple, successfully treating a child with hydrocephalus requires at least three things: a neurosurgeon, a shunt, and sustained follow-up. This triad is in short supply in the developing world, and the conventional “band aid brigades” and surgical mission trips do not fulfill it. Dr. Alvarez, through CAMO and the neurosurgery program established at Hospital Occidente in January 2009 does. The CAMO neurosurgery program successfully treats dozens of children with hydrocephalus each month, giving many the possibility of a normal life. Although CAMO had run out of shunts weeks ago, I brought with me a freshly donated supply from Integra Neurosciences. I knew it was not me so much as the shunts that Enrique had been waiting for.

Enrique’s was a difficult case: On the CT scan, the expansion of the ventricles was so great that only a thin rim of brain remained pressed against the skull: like coconut inside the shell. In addition, the ventricles were abnormally formed and compartmentalized. The placement of the ventricular catheter would need to be extremely precise for it to drain properly and do any good. The valve pressure would need to be carefully selected to avoid under - or over- draining the ventricles. Enrique’s tiny shriveled body would also make placement of the peritoneal catheter problematic. Dr. Alvarez and I agreed on a plan and scheduled the case for the following day.

The next morning we learned that we would be unable to perform the surgery because Enrique had developed pneumonia. His pediatrician felt that with the pneumonia, the risk of general anesthesia and surgery was just too great. Hopefully, the pneumonia could be cleared with a course of antibiotics and a shunt could be placed the following week.

My heart sank. This news was beyond bad. The pneumonia certainly resulted from airway and breathing problems caused by brain and nerve malfunction in turn caused by the hydrocephalus. The chance of clearing the pneumonia with antibiotics alone was vanishingly small. The chance the hydrocephalus would kill him in the interim was overwhelmingly large. The best way to clear the pneumonia included restoring brain and nerve function by relieving the hydrocephalus. In the United States, Enrique would have received an extra-ventricular drain (EVD), a bedside procedure performed with local anesthetic that involves placing a ventricular catheter and connecting it to a sterile external drainage system. With an EVD, the cerebrospinal fluid is diverted outside the body altogether until a shunt can be placed. Aside from the fact that there were no EVDs at Hospital Occidente, EVDs require intensive care settings and meticulously clean surroundings, with constant qualified nurse supervision. Even if we had one, placing an EVD in this crowded, sparsely staffed, tropical hospital was out of the question.

In the following days, other patients and cases crowded in, and I returned home to the United States. My frustration and sadness over being unable to help the tiny boy with the hydrocephalus and Perinaud’s phenomenon was eased by the knowledge that we were able to help many others. I also comforted myself with the hope that his case would help my students and colleagues understand and remember his disease process, thereby helping future patients with similar problems.

Part II -- When I Found Enrique a Year Later. Next Post.

Monday, November 29, 2010

Nutrition and Exercise: Part 4

This is the final part of my Nutrition and Exercise "prescription"... use this to recover from Thanksgiving and survive the Holiday season.


Once you have completed your three-day inventory outlined in Part 2, you can go for your goals.

1. To burn fat and build muscle, which is the key to shaping, subtract 300 to 400 calories from the average number you came up with after the three day inventory. Please note, if your total calories burned exceeds your total calories in, or your total calories in is less than 1200 each day and you are having troubles with weight, volume, energy levels or all three, don’t subtract. You are probably in “starvation mode.” You need to spend a week or two eating more and you may need to change the timing and type of your exercise.

2. “Front load” and “carbohydrate taper” your day both with regards to total calories and proportion of carbohydrates. In other words, make the first meal the biggest (most caloric) and the most carbohydrate – heavy, and the last meal the smallest and the lowest in carbohydrates. You must eat breakfast. For instance, start your day with a big bowl of oatmeal topped with fresh fruit and nuts, and finish with a salmon steak, a handful of fresh cherry tomatoes, and a big mound of spinach.

3. As an alternative to the “carbohydrate taper” during the day, try “carbohydrate bracketing” your workouts – make the meals before and just after working out the heaviest in carbohydrates, and the other meals lower in carbohydrates. These meals should be eaten within an hour before and 30 minutes after the workout to be effective. This way you assure those carbohydrates either get burned up during your workout or used to replenish your glycogen (fast energy stores) afterward.

4. Don’t over-restrict fats (keep them about 20% -30% of calories), but pay attention to where they come from. Try to get more of your fats from whole foods like nuts and avocados or minimally processed oils like extra virgin olive oil, and less from refined oils such as partially hydrogenated corn oil. Some people do better if they avoid dairy fats or animal fats – experiment to see what works best for you, but stay away from “fat free” or “fat substitute” foods – most of them are loaded with synthesized carbohydrates.

5. Take a “day off” every 3rd day or so. On that day you can skip the carbohydrate taper or the 300 calorie subtraction, or both. You can also indulge in “forbidden” processed foods like ice cream or red wine or dark chocolate, but try to stay completely away from the synthesized foods and added chemicals. This keeps your metabolic rate up, and keeps you from getting “dieted down” or in “starvation mode.” As you continue “eating clean,” cravings for processed or synthesized foods will subside.

Although the nutritional changes outlined above are the most important, you cannot neglect exercise and expect great nutrition alone to magically transform your body. You need to spend some time on this too – no excuses - those advertisements for supreme fitness in 4 or 15 minutes a day are a scam. When doing any physical activity, pay attention to your form and listen to your body. If it hurts (as in sharp pain during), stop, back off, re-assess, and begin again more slowly.

1. Make sure you are weight/resistance training at least three times per week, preferably four. Workouts should be at least 30min in length and should include weight selections or moves that are very difficult after 10-12 repetitions. Start light, but about every three weeks or when it gets easier, increase the weight. If you have a particular problem area such as lumpy hips and thighs or a flabby belly, you absolutely can reshape that area by additional targeted lifting or “supersets” twice a week. Remember to do this targeted “body sculpting” in addition to your usual routine, not in place of it (as my friend says, “You can’t drain the deep end of a swimming pool first”).

2. Alternate resistance days or workouts with cardio workouts. Any activity that is fun and gets your heart rate above 100bpm for a sustained period, such as dancing, biking, running, swimming, or “body combat,” is great. For an added boost to your metabolism, do your cardio in the morning, before that first meal.

If you get stuck, go back to the beginning, start writing things down again and re-evaluate your nutrition. Also – try changing your workout. Most good resistance training programs change the exercise every 6 -12 weeks or so to create a little muscle confusion, and this also works for aerobic routines. Whenever you start to get comfortable, try something new and challenging – if you aren’t at least a little sore and/or tired after a workout, you cheated yourself.

Thursday, November 18, 2010

Nutrition and Exercise: Part 3

Continuing from the last blog post...

As you gather your baseline information, you can start to make some changes.

1. Figure out your goals, and find a role model. What do you want to look like? Find a picture of a an athlete, celebrity, or fitness star that you would like to look like, or take one of someone you know that you want to look like and put it in the front of your book. Refer to it at least daily, and visualize yourself in equivalent shape. When tempted to eat for entertainment rather than sustenance, pull that picture out or your goal list and ask yourself if that person would eat that or if the food you are contemplating will help you reach your goal. When tempted to skip that workout, pull out that picture and ask yourself if that person would skip it.

2. Start “eating clean.” Increase the proportion of fresh whole foods, especially green vegetables and fruits, in your diet. Eat a variety of different colors and kinds of these fresh whole foods. Cooked food is OK, and may actually increase the nutritive value of some foods, like tomatoes, but you should know the original. Get rid of all the synthetic food or food-like substances, things made with those synthetics, and most of the processed foods. This means shopping on the perimeter of the grocery, reading labels, planning what you will eat the night or week before, and eliminating fast food, added sugar (use honey), and white flour (use whole grain) or things made with them.

3. Drink more water, and stop drinking calories. Yes, this includes alcoholic beverages. I know that organic apple berry smoothie looks and tastes great and may even contain stuff that is good for you, but you are much better off eating the berries and the yogurt and the apples it contains as whole foods. The smoothie and the whole foods in it are not the same. Before you reach for that diet soda, drink a glass of water, then have the soda if you must. Substitute low calorie natural sweeteners like stevia or xylitol for the synthetics like saccharine and aspartame.

4. Plan what you are going to eat tomorrow, write it down, and make it happen. Avoid circumstantial, default, or unplanned eating. This may mean bringing a small cooler to work, avoiding the break room, or going to the grocery store instead of McDonalds during lunch.

5. Eat frequent small meals instead of three big ones. Six is ideal, but you should be able to do at least four small meals a day. Every one of those meals should contain at least one fresh, whole food.

6. Take a multivitamin and mineral supplement daily, preferably one derived from natural sources.

7. Buy some raw whole flaxseed and a little coffee grinder. Grind up 2-3 tablespoons of flaxseed daily and sprinkle it onto your food or add it to your food. Try to get some in each meal that you are not carbohydrate -restricting. Add it after cooking, as heat breaks down many of the great things in this food.

Wednesday, September 15, 2010

Nutrition and Exercise: Part 2

Continuing on from my last blog post...

First, you need to figure out where you are nutritionally.

1. Get a small notebook that you can keep with you all or most of the time. Save a page or two at the front, then head the first page Day 1, the second Day 2, and the third Day 3. Divide the each page into 5 columns.
2. In the first 2 columns write down everything you eat or drink, including amounts and times, for three days. Write as you go, rather than trying to remember later. Include supplements and “zero calorie” items such as diet sodas.
3. In the third column calculate the number and timing of calories in everything you eat each day, with daily totals and an average total.
4. In the fourth column estimate the percentage and timing (by weight, in grams) of protein, carbohydrate, and fat in everything you eat each day. Total these percentages.
5. In the fifth column classify everything you eat as one of the following: W = whole, P = processed or S = synthesized. Whole foods are generally things that don’t come in a box or package - such as an apple. If they do come in a package, they have less than 3 ingredients and the original item is recognizable. Processed foods come in a box or can or package, usually have more than five added ingredients or have been substantially altered so that you might not know what it is or what it came from without the label - such as apple butter. Synthesized foods come in a box, can, or package, and usually have more than five ingredients, such as an apple – flavored candy or energy bar. If the ingredient list includes “high fructose corn syrup” or “partially hydrogenated” anything, it is synthesized.

Second, you need to figure out where you are activity-wise.

1. On the facing page for Day 1, above, write generally the predominant activities and timing during your day. Itemization should be general, in half hour to 1 hour increments, and should not include things like bathroom breaks during a morning spent sitting at your desk.
2. Classify everything you do as one of the following: H = horizontal, V = vertical, M = moving, C = cardio, R = resistance. Horizontal is for activities where you are lying down resting or sleeping, or reclining in front of the TV. Vertical are activities where you are seated or standing but not otherwise moving around too much, as when working at a desk or driving. Moving equals walking or moving around, as when gardening, walking or hiking level terrain. Cardio is vigorous exercise with sustained elevations in heart rate (>100bpm) as when running, biking, or swimming. Resistance is vigorous anti-gravity training exercise as when weight lifting or doing an exercise class like “Body Pump.”
3. Figure out approximately how many calories you are burning during the day with your current activity levels according to the following formula H=50cal/hr, V=100, M= 200, C= 500, R=400. These numbers are very rough approximations that can vary a lot between individuals depending on muscularity, metabolic rate, general health and size, but this will get you started.

Thursday, September 9, 2010

On Nutrition and Exercise: Part 1

“You are what you eat.”
“You are what you repeatedly do.”


The two sayings above summarize everything I have to say about achieving and maintaining health. The two sayings actually summarize our lives, especially the first one, because all of us, without exception, are eaters and movers. Eating is something we do every day and that shapes everything we are, yet most of us give less time and thought to what we put in our mouths than to what television show to watch. We also all move. How and when we do so quite literally shapes us.

I am a neurosurgeon, wife, mother, fitness enthusiast, and nutrition student. Most of what I will tell you I did not learn in medical school or by reading scientific articles, although both contributed to the foundation of the plan. The books listed below are major references if you want more detail. You can look and feel best and be healthiest by making a few simple but fundamental changes in what you eat and do that goes beyond and works much better than the “Eat Less and Move More” advice I gave my overweight patients for years, and that most of my colleagues still dispense. Only you can make those changes, and a pill or a supplement or a crash diet or a surgical procedure is no substitute. This is more a “body shaping and energizing” plan than a weight loss plan, but will also work for weight loss if that is what you are after.

Recommended Reading:
Burn the Fat, Feed the Muscle – Tom Venuto
The Eat Clean Diet – Tosca Reno
The Gabriel Method – Jon Gabriel
In Defense of Food – Michael Pollan