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5/11/07
Announcer>> This Life and Times health care special is made possible by a grant from QueensCare, a public charity providing health care to the low-income and uninsured residents of Los Angeles County.
Val Zavala>> Tonight on Life and Times --
It's the only cure for severe epilepsy, but could you let doctors remove half your child's brain?
Sarah Swank>> We were so desperate to get the seizures to stop that we were really willing to do anything.
Val Zavala>> And then --
Allen Rucker>> They think people in wheelchairs are deaf, so they go up and yell, "Can I help you?"
Val Zavala>> It's a one in a million disease and he was the one. Now he's helping millions learn about disability.
It's all straight ahead on tonight's Life and Times.
Announcer>> Life and Times is made possible through the generous support of the L.K. Whittier Foundation dedicated to improving the quality of life by supporting innovative endeavors in the fields of medicine, health, science and education.
And by a generous grant from Jim and Anne Rothenberg.
Val Zavala>> Imagine you're new parents, but the doctors tell you that the best thing they can do for your baby is to remove half its brain. Well, hundreds of parents are told that when they learn that their child has severe epilepsy. How can a child survive with half a brain? You'd be amazed.
[Film Clip]
Val Zavala>> The Swank family, Mark and Sarah, Hannah and Weston, live in a charming neighborhood in Long Beach. Sarah is a sales rep for Nike. Mark works for a computer company. They were married in 2003 and, fifteen months later, Hannah was born.
Sarah Swank>> Everything was normal. My pregnancy was normal, I felt great. When she was born, she was born with a little birthmark over her eye and everybody told us, "Don't worry about it. It's nothing."
Val Zavala>> But the birthmark was a clue, a marker for epilepsy.
Sarah Swank>> And then at seven months of age, she had had a rough night. She had thrown up and was just sick and wasn't feeling well. Mark had actually gone in to get her.
Mark Swank>> And that's when we noticed that she was having seizures.
Val Zavala>> What did you actually see?
Mark Swank>> Her first seizures, she was out of it. She was sort of unconscious and her hand was clutching like this and her jaw was clutching. To be honest, when I first pulled her out of the crib, I had no idea. I didn't know what I was seeing.
Val Zavala>> They rushed her to the emergency room. She was admitted to the hospital immediately. Here is video they took in the hospital.
Sarah Swank>> "Hannah, you hear Mom? Hannah, I'm right here. Hannah?"
Val Zavala>> Within forty-eight hours, the doctors had a diagnosis. Hannah had a rare brain condition called Sturge-Weber Syndrome.
Mark Swank>> It's a vascular malformation of the brain. So it means there are too many blood vessels and, what that causes, it sort of kills off the brain. The brain dies off because the blood can't -- there's too much blood that gets into the brain tissue and it doesn't have the ability to drain out fast enough.
Val Zavala>> It was causing seizures. They put Hannah on anti-seizure medication. The drugs worked. The Swanks returned home and everything seemed to be going well. But over the next year or so, MRIs showed that the Sturge-Weber Syndrome was progressing, affecting a larger and larger portion of her young brain. Then just before her second birthday, it happened again.
Sarah Swank>> For two and a half weeks, she twitched like this straight until we were able to --
Val Zavala>> -- just constant seizures?
Mark Swank>> Yes.
Sarah Swank>> Constant. Never stopped. And she was able to, you know, function and do things, but her left hand was always twitching. So that's when we got transferred up to UCLA and met Dr. Mathern.
Dr. Gary Mathern>> She was sent in, I think, rather urgently.
Val Zavala>> Dr. Gary Mathern is a neurosurgeon at UCLA specializing in pediatric epilepsy.
Dr. Gary Mathern>> The ones that eventually require surgery, they can have multiple seizures per day, sometimes as high as over a hundred.
Mark Swank>> I remember when he said that, on a scale from one to ten, this is a ten-plus surgery. That was one of the indications that this was as serious as it can get.
Val Zavala>> And then he told them that the surgery would require removing nearly half of Hannah's brain. That's right. Extracting or disconnecting the right hemisphere of this two year old's brain.
Sarah Swank>> We were so desperate to get the seizures to stop that we were really willing to do anything.
Val Zavala>> Removing half of a baby's brain may sound extreme, but in fact much of an infant's brain is undeveloped. Different parts come online, so to speak, in stages so that you can remove sections that are not yet functioning. The rest of the brain, being so plastic, will adapt. Dr. Mathern has operated on infants as young as three months old.
Dr. Gary Mathern>> I mean, these are not normal brains. These are abnormal brains. So by taking out abnormal brains, you're allowing the normal brain the opportunity to develop as best it can without the burden of the continued seizures.
Val Zavala>> How can you tell that a little tiny baby has epilepsy? How early can you tell if a little tiny baby has epilepsy?
Dr. Gary Mathern>> In retrospect, we've had moms tells us stories about feeling their baby in their womb and that the baby didn't roll like their other children, that they did these rhythmic thrusting motions which, in hindsight, probably was some suggestion that this baby was having seizures even in utero.
Val Zavala>> And what would happen to children with severe epilepsy if they don't get the surgery?
Dr. Gary Mathern>> Without treatment, I mean, these are children whose seizures are so severe that they're not able to feed. They're not thriving, okay? So this child, if you don't stop the seizures, this child's got a very high risk of dying.
Mark Swank>> And as the brain has more seizures, it starts to think that seizures are normal and they can actually jump over to the healthy side of the brain and the healthy side of the brain can start having seizures.
Dr. Gary Mathern>> That child is at great risk. They can end up with IQ scores less than fifty if you don't intervene.
Sarah Swank>> You know, we really didn't have a choice. We had to do the surgery.
Dr. Gary Mathern>> I took out a block or a wedge that would go in from like here to here.
Val Zavala>> The operation lasts eight to twelve hours.
Dr. Gary Mathern>> All this dark stuff here, this is the abnormal blood vessels that causes that Sturge-Weber condition.
Val Zavala>> Hannah emerged from the OR seizure-free.
Sarah Swank>> None at all, thank God.
Val Zavala>> One major hurdle was cleared, but now a whole new set of challenges had to be tackled.
Sarah Swank>> She couldn't sit, she couldn't chew, she couldn't suck on a straw, she obviously couldn't walk.
>> "All right, what are we going to do first?"
Val Zavala>> Five times a week, Hannah comes here to the Miller Children's Hospital in Long Beach for outpatient therapy. Just five months ago, she couldn't even lift her head.
>> "Can I have one? Thank you."
Mark Swank>> Her vocabulary has expanded from even before the surgery. It's mind-boggling.
>> "One, two, three -- go."
Val Zavala>> But Hannah's left arm is virtually useless. It was the right side of the brain that was removed, so her left arm is affected. Her therapists, Chris and Eric, try to encourage her to use it.
>> "We know that it's so hard with that hand, huh? We need two hands, two hands. Ready? One, two, three -- go. You did it."
Sarah Swank>> At this point, it's something where she doesn't like it.
Mark Swank>> A daily battle.
Sarah Swank>> And if she's playing and it's in the way, she'll pick it up and throw it. She doesn't care for it at all.
Val Zavala>> The team at UCLA has been performing this operation on infants since the early 1980s. Dr. Mathern says there are thousands of children with severe epilepsy who could benefit from the surgery.
Dr. Gary Mathern>> We have a few children who've gone on to be near normal IQ. Not many, but a few. Most end up a little behind their peers, but not as bad as if they had continued to seize. So you win, but you just don't quite win to complete normalcy.
Val Zavala>> Mark and Sarah come to therapy along with Hannah as often as they can. Then they continue the techniques at home.
Sarah Swank>> "You're okay, you're okay. You can do it."
Mark Swank>> "You can get up."
Sarah Swank>> "You can do it."
Mark Swank>> We know that she'll have some limitations on what she'll be able to do, but the whole reason that we did it was to give her the ability to reach whatever potential she can reach.
Sarah Swank>> That she'll just grow up and be everything that she can be. You know, we're so proud of her. She is an unbelievable child.
Dr. Gary Mathern>> When those little kids come back, they may never remember who you are. But you know what? If they can say, "Mommy, who is this person?", you've won. You've won.
[Film Clip]
Announcer>> Kcet.org is the place to look for the very latest on Life and Times. You'll find previews of upcoming stories, plus transcripts and audio of past episodes and links to some of our most interesting features. Just go to kcet.org, scroll down the page and click on "Life and Times".
Val Zavala>> He wasn't in a car accident or injured in any way and yet literally overnight he was paralyzed from the waist down. So how do you adjust to life in a wheelchair at age fifty-one? As Hena Cuevas tells us, it helps to write a book.
Hena Cuevas>> Ninety minutes is all it took for Allen Rucker's life to be flipped upside down.
Allen Rucker>> It's just like turning a page in your life. At one o'clock in the afternoon, I was perfectly normal, ambulatory, and by two-thirty, I was paralyzed for the rest of my life.
Hena Cuevas>> He went from being a fifty-one year old runner to navigating through life in a wheelchair. What got him here is a rare disorder. It attacked him ten years ago while he was napping.
Allen Rucker>> I was laying around the house on a Tuesday afternoon nursing what I thought was a sore throat. I felt this incredible pain, a burning sensation, around my middle and I truly thought I had the flu. I had the worst case of the flu because you don't really think about becoming paralyzed, right? It's not the first thing that enters your mind. And over the next hour and a half, I became progressively weaker and weaker and more and more frightened to the point that I then, at one point, tried to get out of the bed and I fell on the floor.
Hena Cuevas>> The numbness, he says, started at his feet and quickly crawled up his body.
Allen Rucker>> All during that period, I could still pinch my leg and it hurt and I could still move my leg until I reached the point where I fell on the ground. Then when I got myself back into bed, I could still pinch my leg and it hurt and I could still like move my toes. So it probably took another thirty minutes to become totally -- by the time I got to the hospital, though, I couldn't feel my legs or move them at all. It was over.
Hena Cuevas>> While all that was going on, at any moment did you think that that's what was happening? That you were becoming paralyzed?
Allen Rucker>> I had never -- well, when you fall down and you can't move half your body, the word probably pops into your mind. But actually during that entire thing, the word paralysis never came to mind because why would I have paralysis?
Hena Cuevas>> In the ER, Allen was told he was struck by Transverse Myelitis, a rare disorder that causes inflammation of the spinal cord.
Dr. Daniel Rovener>> It's a rare phenomenon and there's no way to predict it.
Hena Cuevas>> Dr. Daniel Rovener is the neurologist at Cedars-Sinai Medical Center who was called in to treat Rucker. He says that, in many cases, the body gets confused.
Dr. Daniel Rovener>> Patients may have a viral infection or some even unrecognized infection and the body responds to that and somehow mistakes part of the spinal cord for the infectious agent, so there is a focal inflammation of the spinal cord.
Hena Cuevas>> The result? Paralysis. Transverse Myelitis is so rare that it only hits one in a million people. Allen's doctor told him that, in his case, it was simply bad luck.
Allen Rucker>> I tried to say, "I bet you it was that Burrito I ate. Let's sue that Burrito place." No, I kept trying to come up with these theories as to why it happened so that, if it was self-induced, I'd know whatever that behavior is or whatever I did to do that, I wouldn't do that again, right? But it wasn't. It's just mysterious.
Hena Cuevas>> After he was told that he'd never walk again, Rucker then began the long process of rehabilitation. He spent almost two months in a hospital learning how to live his life in a wheelchair, but he says that he was also going through an emotional recovery, a process he describes as mourning for the loss of the lower half of his body. It's a mourning, he says, that continues to hit him even ten years later. What about the days that you don't feel fine?
Allen Rucker>> Well, I don't really like to talk about those days (laughter). Listen, I'm paralyzed. I'll never walk again. It dawns on you. With me, it's almost with regularity. You know, every five or six weeks, there's a two or three day period that I go through that I don't know why I'm so glum. But it's probably because that realization has come back into my life.
Hena Cuevas>> Allen, now sixty-one, is a writer for television. But a few years ago, he decided to put his own story down on paper.
Allen Rucker>> I just thought it was just the most incredible kind of life shift that occurred so suddenly and out of nowhere and not really caused by anything that I had to do with. So it came from outside of me and I just started taking notes on it immediately realizing that this was a story. Then as I went through the story, I realized that I was going through a situation that a lot of people have gone through and it rarely gets articulated.
Hena Cuevas>> His book is called "The Best Seat in the House: How I Woke Up One Tuesday and Was Paralyzed For Life". It's surprisingly open about the indignities of being paralyzed. Basically, everything you wanted to know, but were afraid to ask.
Allen Rucker>> Because a lot of it has to do with, you know, your bowel function, your sex life, all kinds of things that are hard for people to talk about even if they're walking around and probably harder for someone to talk about when, all of a sudden, you lose those things that you've taken for granted for fifty years.
Hena Cuevas>> There is plenty of humor in his book, especially when he describes how some people treat the disabled.
Allen Rucker>> They think you're deaf. They think people in wheelchairs are deaf, so they yell, "Can I help you?" Again, it's that feeling like your grandfather. You almost get a sense about how old people are often treated. That's kind of like I'm a step ahead of the game, you know. I'm not that old, okay? But I can see how it's irritating to old people to be condescended to all the time because that's what people do.
Hena Cuevas>> Once you leave the house, how difficult is it to maneuver once you're outside?
Allen Rucker>> Well, you see a world from a different point of view. My emphasis is not so much the fact that you can't get into restaurants or you can't get through an aisle at Nordstrom's, which is a hassle sometimes, but it's really the way that the world perceives the disabled that I learned was a real lesson and it continues to be a lesson. It's not like I have all the answers about it.
Hena Cuevas>> Allen's book is getting rave reviews and he's traveling around the country doing book signings. But he says the best part is the letters he receives.
Allen Rucker>> I would say that half of the letters I've received are not from the disabled, but from family members of the disabled. People go, "I didn't really realize what my husband or my son or my daughter was going through." That's a good thing.
Hena Cuevas>> There are only about thirty-five thousand cases of Transverse Myelitis in the United States and, according to Dr. Rovener, there's no known cure, although it's completely reversible in about half of all cases.
Dr. David Rovenere>> Well, Mr. Rucker, unfortunately, did not improve very significantly or at all. I mean, he's been a wheelchair paraplegic from the waist down for approximately ten years now. The likelihood of spontaneous improvement is negligible.
Allen Rucker>> I don't think for a minute about why me or why it happened because it's an unanswerable question and that only leads you back to kind of feeling sorry for yourself. If you go, well, this is the situation. How are we going to deal with it, then you take a kind of more pragmatic approach and good things happen. You know, there are good days and bad days. There are pluses and minuses and you just keep looking for the pluses.
Hena Cuevas>> And a big plus, he says, is being able to give voice to those who are living life at fifty-four inches tall.
Allen Rucker>> If I can help people see the disabled in just a slightly different way, the next person they run into in a wheelchair and they look in their eyes and not look at their legs, then that's a good thing. But I'm really only a spokesperson for myself and I'm only a spokesperson for the experience that I've went through, which I think is shared by other people. I don't want to run for office or anything, so don't -- you know, please.
Hena Cuevas>> I'm Hena Cuevas for Life and Times.
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Val Zavala>> Tired of trying to get a last-minute appointment with your doctor for something simple? Well, you'll like this new trend. It puts the clinics where the customers are and, as Roger Cooper tells us, no appointment necessary.
Roger Cooper>> "Attention, Wal-Mart shoppers. The nurse can see you now on Aisle Number Six." Could an announcement like that be in your future? It might the next time you're in a Target, a drugstore or even a grocery store. There's an experiment underway to put walk-in health clinics inside established stores. Get treated for what ails you in the same place you buy your toothpaste or a loaf of bread.
Ann Marie Coppen>> "She should be taking two twice a day."
Roger Cooper>> Since October, this walk-in clinic has been treating patients inside this Rite Aid in Costa Mesa. It's operated by Lindora Health, also known for its weight loss programs.
Cynthia Staffer Graff>> This is our first clinic. In fact, it's southern California's first retail in-store clinic.
Roger Cooper>> Cynthia Staffer Graff is President and CEO of Lindora. The company has an agreement to put even more clinics in Rite Aids in Orange County and Los Angeles.
Cynthia Staffer Graff>> We now have three more under construction, hopefully another seven by the end of the year.
Roger Cooper>> But they won't be the first or the last. In northern California, there are seven Quick Health clinics up and running inside Wal-Marts and drugstores. Minneapolis-based Minute Clinic already has a hundred fifty-eight retail clinics in Targets and other stores in nineteen states.
Mary Kate Scott>> The clinics have dramatically expanded. We've gone from sixty-two clinics and we're about three hundred twenty right now. That's significant expansion.
Roger Cooper>> Health care consultant, Mary Kate Scott, in Marina del Rey has researched retail clinics for a report commissioned by the California Health Care Foundation. She says these clinics are emerging to fill a gap in our health system.
Mary Kate Scott>> There are a couple places that the current health care system doesn't meet our needs. One is affordable, quick access for this basic care. So many of us have to wait days before we can actually see the physician, see our family doctor, and get what we need which is quick, affordable care.
Roger Cooper>> These new retail clinics take walk-ins, no appointment necessary. Most often, they're staffed by a nurse practitioner like Ann Marie Coppen and they're open evenings and weekends.
>> "It was a bike accident a couple of weeks ago. It was healing up pretty good and then I just got this."
Ann Marie Coppen>> "Because it's not open. I would really urge you to consider Keflex."
Roger Cooper>> Retail clinics treat about forty common ailments, things like the flu and skin rashes, or simple needs like inoculations. Patients with anything more serious get referred to a physician or a hospital.
Ann Marie Coppen>> We do sports physicals, urinary tract infections. We do a quick check for cholesterol, blood sugar.
Mary Kate Scott>> A really common use of the clinic is, say, strep throat or a middle ear infection or a flu shot.
Roger Cooper>> All within fifteen or twenty minutes.
Ann Marie Coppen>> They sign up and we provide them with a thorough medical assessment. We provide them with treatment on the spot and, again, if they need a prescription, then they're able to fill it right here within minutes.
Roger Cooper>> And how do consumers like it?
George Baker>> I think that's very unique. I think a lot of people don't have doctors, you know. I don't have a doctor.
Angela Cruz>> We don't have insurance right now. When I saw this, it was just wonderful for us because we have like a little walk-in clinic without the wait.
Roger Cooper>> But doctors may not be as enthused. They are concerned that clinics are sanitary, that they follow accepted medical practices, that consumers are informed of the nurse's qualifications, that records are computerized, and that quality of care is maintained.
Ann Marie Coppen>> "And you do have a slight ear infection."
Roger Cooper>> Retail clinics have responded. They point out that, in California, all the nurse practitioners must have phone access to a doctor and they say that they're not trying to preempt primary care physicians.
Cynthia Staffer Graff>> This is really strictly for episodic walk-in treatment. We're definitely not replacing the primary care physician. In fact, we often refer patients back to their primary care.
Mary Kate Scott>> Most of the medical community is actually quite supportive. In fact, some physicians are actually referring patients to these clinics, particularly after hours and on weekends. But there are some physicians who, I think, are nervous and are saying, "Are they taking away some lucrative business from me?" The majority of physicians aren't. They're saying, you know, "You don't spend seven or more years in medical school to treat strep throat."
Roger Cooper>> And how much do these clinics charge? The price list is right up front for all to see. Treatments range from about forty dollars up to about seventy. It's much less than many doctor visits or trips to the emergency room, both in money and in time.
Mary Kate Scott>> And waiting is expensive for someone that gets paid by the hour and doesn't get paid if they don't work. And it's expensive because it's a much higher cost to deliver care in urgent or emergency care centers.
Roger Cooper>> The study points out that these retail health clinics are still very much experimental and it remains to be seen whether people will be comfortable getting their health care near the same aisles where they pick up their motor oil and their laundry detergent.
Cynthia Staffer Graff>> Well, we wondered about that. Whether, you know, there would be an issue with privacy. So far, the people who've come in for treatment, the need for immediate treatment, the need for convenience, has trumped the desire for privacy. Now, of course, we try to be as private as possible, but we're in a retail setting.
Roger Cooper>> So will retail clinics become as common as pharmacies? Plenty of questions must still be answered. Will they make enough money to stay in business? Will they accept insurance? Can they serve low-income families?
Mary Kate Scott>> There might be an opportunity for the government to consider buying health care vouchers at clinics and providing clinic visits to the under-served. In effect, they would be creating a market with these vouchers and really encouraging clinic operators to come to California.
Roger Cooper>> Both the AMA and the American Academy of Family Physicians are monitoring the retail clinic's concept very closely, and both organizations have issued recommendations on how they should and shouldn't be run.
Cynthia Staffer Graff>> They're predicting there will probably be three thousand of these clinics in the next three years.
Roger Cooper>> But ultimately, consumers will make the choice. Are we willing, as the foundation report puts it, to buy medical care in the express lane?
Ann Marie Coppen>> "All right, Tim. Thank you so much and thanks for being so gracious."
Roger Cooper>> In Orange County, I'm Roger Cooper for Life and Times.
Val Zavala>> To see these and past health care stories, go to kcet.org, click on Life and Times, and then the Health and Science tab. I'm Val Zavala. Thanks for joining us for this Life and Times health care special.
Announcer>> This Life and Times health care special is made possible by a grant from QueensCare, a public charity providing health care to the low-income and uninsured residents of Los Angeles.
By the L.K. Whittier Foundation dedicated to improving the quality of life by supporting innovative endeavors in the fields of medicine, health, science and education.
And by a generous grant from Jim and Anne Rothenberg.
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