A guide to the memoir
Chris Gabbard earned his Ph.D. at Stanford University and is Professor of English at the University of North Florida, where he teaches courses on the literature of the British Enlightenment and disability studies in the Humanities. In addition to publishing numerous academic articles in these fields, he has written on the need to strengthen the social safety net for families caring for significantly impaired and medically complex children.
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A Life Beyond Reason makes an excellent adoption for university courses in health humanities, disability studies, bioethics, sociology, literary studies, medical ethics, and narrative medicine. Students can read this poignant and powerfully written memoir read as
- a study in what the nondisabled can learn from the disability community
- a compelling response to Peter Singer
- a call to change how we view caregiving
- a model of spellbinding nonfiction.
Examination copies for course adoption and Freshman Year Experience programs are available through the distributor, Penguin Random House. Go here for ordering details: Desk / Exam copies
THE BACKSTORY OF THE BOOK, IN THE AUTHOR’S WORDS
I would like to speak about my son’s brief, happy life. He was born with significant and multiple impairments. The most serious of his diagnoses was hypoxic ischemic encephalopathy or H.I.E. In other words, he experienced a lack of blood and oxygen before or during his delivery, and this deprivation caused severe brain damage.
Despite his bad start, August was a happy child. I don’t know how to account for this happiness except to attribute it to the indomitable exuberance of youth. August was a jolly little fellow, the most cheerful person you can imagine, a munchkin delightful to be with. My wife Ilene and I named him August, which means “esteemed” or “venerable.”
When I was younger, I believed that love was an indulgence for weak-minded people, and I was a confirmed atheist, only believing in reality as it was. August turned out to be my spirit guide, for he showed me a separate reality.
In the immediate aftermath of his birth, I didn’t know that he would play this role in my life. At that time, my wife Ilene and I encountered a wall of silence at UCSF, the hospital where he was born. No one would tell us what had gone wrong at his birth. Everything that we know today in 2020 about his delivery was not apparent to us the year he came into our lives. It took us sixteen years to piece together the story of what happened in the delivery suite. The full picture of his birth came to us two years after his death.
His life was short on account of the dysfunctional health care system. Health care in the United States presents us with a picture that is both utopian and dystopian. August’s care fell entirely on the dystopian side: his mismanaged birth and an inappropriate treatment with a futuristic device from Medtronic led to his death in 2013. I will speak about these events in greater detail below.
We found no redress in the court system. The average American citizen is a little too quick to conclude that most medical malpractice cases are frivolous. This misunderstanding persists even though tens, if not hundreds, of thousands of Americans die annually from medical error. It is also commonly believed that if a patient is truly injured through negligence or malpractice, avenues exist to seek compensation. Our family discovered the opposite: injured patients have only the slimmest of chances of ever getting into a courtroom, much less of winning a case.
We also discovered that the social safety net for families like ours who are caring for medically complex children is inadequate. During the two years we were living in California (1999-2001), it was sufficient. For once, government operated as it should. But when our family moved to Florida in 2001, we discovered that we would have no support whatsoever for at least ten years. We were left to fend for ourselves. The public assumes that a robust safety net exists, but this is not the case in many parts of the U.S.
My academic specialty is the literature of the British Enlightenment. The manner of my son’s care forced me to reconsider my assumptions about the European Enlightenment and my acceptance of its values, which, before his birth, had been entirely uncritical. By “Enlightenment values,” I mean (and here I’ll give a “quick-and-dirty” summation) the belief that human beings should live their lives in the light of reason, that scientific rationality and facts and reason are all that matter.
My son did not break my belief in facts and reason so much as end my blind faith in them. It is not that they don’t matter anymore, but that they are not all that matter. Love is something else. It is a separate reality. I did not set out wanting to write a book exploring this theme. Quite the contrary, I started it when I was furious and wanting to burn down the house of medicine. But the process of writing a book about my son’s life led me to this new awareness.
THE STORY BEGINS IN SAN FRANCISCO AT UCSF IN 1999
Up until the hour of August’s birth, the pregnancy had proceeded uneventfully. At least, this was the opinion of the physicians who conducted it. Ilene herself was a medical professional working at the same hospital where she planned to have the birth. She had followed all of the recommendations for a healthy pregnancy found in What To Expect When You’re Expecting and other sources. She had taken great care of herself, and her pregnancy was deemed to be low risk. Her doctors had even allowed our baby to go eleven days past the due date before inducing labor.
From the point of view of the delivery doctors, nothing worrisome appeared during the gestation period. Indeed, no sign of trouble came to their attention (by their account, at least) until eleven minutes before August emerged from the womb gray, limp, and lifeless. A specially dispatched rescue team resuscitated him at the brink, but not before he suffered severe brain damage.
We were told afterward that August suffered from H.I.E. due to events unknown occurring prior to or at his birth. Other diagnoses and labels for chronic and disabling conditions trailed after him for the remainder of his short life: cerebral palsy, spastic quadriplegia, profound mental retardation, cortical visual impairment, microcephaly, seizure disorder, osteopenia—and the list went on.
Pulled back from the brink, August became Lazarus in a wheelchair. During his fourteen years of life he was nonverbal, incontinent, spastically paralyzed, and virtually blind. He could not sit in a chair the way a typically developing child would. He needed upper trunk support, so he had to be secured in his wheelchair with straps holding his shoulders and chest in place. Propped upright, his head lolled, falling forward and backward: the muscles in his neck never developed properly.
Why did a pregnancy that had gone so well right up until, supposedly, eleven minutes prior to birth end in such a horrific way? Afterward, no one would answer this question. No one would tell us anything. The doctors who delivered him and the hospital’s representatives never explained what went wrong. No one would give us an explanation. My wife and I encountered a wall of silence.
August passed away in 2013, but in actuality he died as a result of the way he was delivered. He nearly perished at his birth, and his passing, it turned out, was merely postponed. Ilene and I are glad that we were able to spend this precious borrowed time with him.
THE UNIVERSITY OF CALIFORNIA, SAN FRANCISCO (U.C.S.F.)
The University of California, San Francisco (U.C.S.F.) Medical Center is the hospital where August experienced a catastrophic birth on March 5, 1999. In the memoir (I captured this, my son’s story, in the memoir– the long version of this story), it is called Loma Prieta Medical Center.
Ilene was working there as a clinical professor of Physical Therapy. She had successfully treated the dean of the medical school’s knee, so, as a little ‘thank you,’ she was assigned one of the medical center’s V.I.P. delivery suites. It offered a panoramic view of downtown San Francisco.
The baby’s due date had been February 20th. Troubling signs had been detected as early as February 22nd, but the doctors managing Ilene’s prenatal care told her not to be concerned about them. One nurse said, “All expectant moms worry too much.”
We arrived before 9 a.m. on Wednesday morning, March 3rd, for Ilene’s induction to begin.
Two days later, Ilene was in her FORTY-SECOND hour of labor when August was born at 3:44 a.m. Friday, March 5th.
But at 2:55 a.m., forty-nine minutes prior, the baby had given indications of a low heart rate, known as bradycardia. Bradycardia signifies that a baby is in distress. When it is detected, doctors have thirty minutes to get the baby out, often by cesarean section.
Why did no one order a c-section? One reason was that the delivery doctors, Dr. Sarah Kilpatrick and Dr. Lisa Lipschitz (more about them to come), had grown skeptical of fetal-heart monitors, which they believed to be generally unreliable. The monitor was the source of the information about his bradycardia, and they dismissed its accuracy. Dr. Sarah Kilpatrick, the attending physician, was out of the birth suite a good deal, leaving management of the birth to a resident, Dr. Lipschitz, who assumed that the fetal-heart monitor reading “must be mom’s.”
Another reason had to do with the fact that U.C.S.F. was attempting drive down its C-section rate. Most C-sections are elective, but some are necessary. Because the hospital’s own and the national rates of elective C-sections were understood to be too high, the hospital’s administrators were unofficially discouraging them. The hospital was trying (with some justification) to bend the trend line back down.
However, in our son’s case, the failure to even mention C-section as being an option, much less offer one, led to a cataclysmic outcome.
After August spent ten days in the Intensive Care Nursery (ICN), Ilene and I took our baby home. I finished my dissertation and started looking for a job with good health benefits. We were going to need them for August.
If eighteenth-century British literature is your speciality, the world does not line up at your door when you graduate. You have to go to where the job is. In my case, that was to a young school, UNF in Jacksonville. What it lacks in national profile, it makes up in curb appeal. The campus is gorgeous, and it has turned out to be a splendid place to teach.
THE UCSF DOCTORS INVOLVED WITH THE BIRTH (1999)
August was delivered by Dr. Sarah Kilpatrick (the attending physician). She is a perinatologist, a doctor trained in the subspecialty of obstetrics concerned with the care of the fetus and high-risk or complicated pregnancies. Such a doctor is supposed to be highly skilled in prenatal diagnosis. The question is, why did this experienced, highly competent, and highly respected practitioner fail to detect a major problem in the delivery room?
This is a question that she seemed unwilling to answer. The most information she offered Ilene at a six-week regular postpartum check about August’s disastrous birth was that it was “bad luck.” In all probability, the cause had less to do with luck and more with her skepticism about fetal-heart monitors, U.C.S.F.’s discouraging of C-sections, and the fact that the hospital was extremely busy on the morning August was born (more about this last item to follow). Dr. Kilpatrick is now the Chair of the Department of Obstetrics and Gynecology at Cedars Sinai in Los Angeles. In Life Beyond Reason, she becomes Dr. Sandra Latchesik, her name deriving from the first of the three Fates of ancient Greek mythology, Lachesis.
The resident physician under Dr. Kilpatrick’s supervision was Dr. Lisa Lipschitz. In retrospect, Ilene and I realize that she was less than adept when it came to reading a fetal-heart monitor. She is the one who told the main L & D nurse that the heartbeat the fetal monitor was detecting “must be mom’s” (more about this later). She now practices medicine at Scripps Health in San Diego. Her name in the book is Dr. Lisette Atropski, a pseudonym deriving from the second of the Fates, Atropos.
A third doctor, the attending physician Dr. Julian Parer, started Ilene’s induction at 9 a.m. Wednesday, March 3rd, 1999. He had a marvelous bedside manner and was a truly delightful man. (Evidently, he died in 2016 while hiking.) That Wednesday, he went off duty later in the day and was replaced by Dr. Kilpatrick. Ironically, he had written a textbook on the subject of how to interpret fetal-heart-monitor readings. If only he had been August’s delivery doctor and not Dr. Lipschitz and her supervisor, Dr. Kilpatrick, that fateful morning. He is identified in the book as Dr. John Klothoberg; this pseudonym springs from the third Fate, Clotho.
In the photo above, Dr. Kilpatrick is on the left. Center left is a resident, name unknown. Center right is a friend attending the birth; in the book she is Joanne Sasaki. On the right is the main labor-and-delivery (L & D) nurse whose name we also don’t know.
Forty-nine minutes prior to the birth, at approximately 2:55 a.m., the L & D nurse noticed that a problem was showing up on the fetal-heart monitor and said, “These vitals are not reassuring. I don’t believe the baby’s heart rate should be this low. It’s in the eighties.”
The bradycardia indicated that the baby was in distress and that the delivery team would have thirty minutes to get the baby out by C-section. Dr. Lipschitz dismissed the L & D nurse’s concern, saying that the heartbeat “must be mom’s.” At approximately 3:03 a.m., Dr. Kilpatrick stepped into the delivery suite for less than a minute. Dr. Lipschitz told her that a problem was occurring with the heart monitor. Kilpatrick didn’t respond, and Lipschitz didn’t repeat herself. Kilpatrick obviously was in a hurry. Before dashing out, she unexpectedly shouted, “We’re going to have a baby!” This exclamation seemed so out of character that I did a double take. Then she was gone. But she obviously heard what Lipschitz said because the first thing she asked when she re-entered the suite about thirty minutes later, at approximately 3:33 a.m., was, “There was a problem with the monitor?”
Dr. Kilpatrick, I should explain, was rarely in the delivery suite. Ilene, “Joanne Sasaki,” and I had dubbed her “Doctor Dash Smoke” because of her habit of dashing into the room only to immediately dash out again, seemingly leaving a trail of smoke in her wake. She was rushing because the hospital at that very moment was undergoing a crush of births. A woman at the nurse’s station earlier than morning had said to me that “Everyone’s giving birth.” It can be safely inferred that the institution was understaffed with regard to accommodating this unusually high volume.
The fact that the hospital was slammed with mothers giving birth explains why our main L & D nurse had been brought in. She was a per diem–a temp worker–who had come to U.C.S.F. the morning of the previous day, Thursday, by public transportation, including a Greyhound Bus, from Sacramento ninety miles away. Being an outsider, she had the advantage of being able to see U.C.S.F.’s protocols with fresh eyes. But being an outsider also was a detriment because, not being a regular employee, she was easy for the staff members to dismiss. In the book I should have given her the pseudonym Cassandra.
The L & D nurse’s race and body type also were factors. For one thing, she was the only Black person on the delivery team. In his 2015 memoir Black Man in a White Coat, Dr. Damon Tweedy notes that the input of African American medical professionals is often discounted. For another, she was zaftig, whereas the others were svelte. She didn’t look and sound like the others with whom she was working and so, in a crucial way, didn’t fit in.
To be fair, what were Dr. Kilpatrick’s and Dr. Lipschitz’s thinking? They believed that fetal-heart monitors in general were unreliable and that the one they were using with Ilene was not functioning properly. However, belying the monitor’s supposed unreliability was the fact that forty-nine minutes later, at 3:44 a.m., August was born non-responsive. The fetal heart monitor evidently had been correct all along.
After several minutes of a different team of doctors attempting to resuscitate him, August finally took his first breath. But by then the brain damage from lack of oxygen had been done.
Had Dr. Lipschitz and Dr. Kilpatrick taken the L & D nurse’s warning seriously, our son’s outcome would have been considerably different. In all likelihood August probably would be alive today and perhaps would have grown up a typically developing child.
I have forgiven all of the doctors involved in our son’s case, but many years had to go by before I could get to the place of forgiveness. It was relatively easy to excuse Dr. Kilpatrick and Dr. Lipschitz because, at the end of the day, they were doing what made sense to them at the time. Neither knew how bad the outcome would be. If they did not step forward following the birth and own up to their errors, it was because they form part of a medical culture that refuses to admit mistakes. I can’t blame them for what many of them do.
One of the take-away lessons Ilene and I learned from this experience is this: if a hospital makes a mistake during a birth, and the child will require a lifetime of care on account of it, no one from the institution runs after the parents as they are exiting the doors with their new baby to hand them a check.
THE LEGAL CASE PURSUED BY HERSH & HERSH, A SAN FRANCISCO LAW FIRM (2002-2004)
In the days and months following August’s birth, Ilene and I were reluctant to sue the doctors and U.C.S.F. because we didn’t want to be “litigious people.” However, when we eventually decided to bring a case, our main objective was to receive an answer to a single question: what happened to our son?
Over time we discovered that suing for this answer was naive because answers don’t pay an attorney’s bills. We also were unaware at the start of our journey that caring for August over his lifetime was going to cost in the hundreds of thousands, if not millions of dollars. People explained to us that we and our child had a hard road ahead and that we were suing not for ourselves, but on his behalf.
We went through three attorneys in our attempt to litigate the malpractice case against U.C.S.F. The first we thought too aggressive. The second we thought too meek. Like Goldilocks, we thought the third was “just right.” This was Charles Kelly of the San Francisco firm Hersh & Hersh (Buchanan & Buchanan in the book). In the memoir he is Byron Grayscale. Hersh & Hersh took our case on a contingency basis; contingency means that a fee is payable only if there is a favorable result.
“Chuck,” as we called him then, had to mount a case in spite of M.I.C.R.A., California’s Medical Injury Compensation Reform Act of 1975. M.I.C.R.A. placed a cap on damage awards so draconian that it had driven most personal-injury attorneys from the field. The margin of error had simply grown too thin for them to stay in that business. (This is still the case with M.I.C.R.A. in that state: it is almost impossible for a medically injured patient to win a malpractice suit.) Of course, everyone hates lawyers — until they need one. But to whom were we supposed to turn when we needed to seek redress?
He additionally was tasked with successfully suing U.C.S.F., which is the largest employer in the city and county of San Francisco and a powerful force in the region. It keeps a battery of lawyers full-time on its payroll and has the deepest of deep pockets. A formidable force, it was the Goliath to our David.
Kelly would rely entirely on the finding of the outside medical expert he hired to review August’s birth records. This outside expert was Dr. Jeffrey Greenspoon (Dr. James Baelish in the book). At that time he was practicing medicine and teaching at the University of California, Los Angeles (U.C.L.A.).
Like Dr. Kilpatrick, Greenspoon was a perinatologist working at a medical school associated with the University of California system. In retrospect, we suspect that he knew Kilpatrick personally and so should not have agreed to serve as an independent medical expert. He would have had to have run into her at academic conferences and served as a peer reviewer on at least one of her many scholarly articles. He himself was a leading scholar in the field of perinatology. Even if he didn’t know her first hand, he had to have known of her. He was a respected elder figure, and she was a rising star.
From 2003-2004, Greenspoon reviewed August’s birth records. In the late spring of 2004, he concluded that Kilpatrick had done nothing wrong and that U.C.S.F. was not at fault. Kelly’s letter to us, dated June 28, 2004, informed us that Hersh & Hersh was no longer interested in litigating our case. Greenspoon had “re-reviewed the heart rate tracing [presumably for 2:55 a.m.] and believes that the heart rate seen on the heart monitor tracing is Ilene’s and not August’s.”
Kelly’s letter went on to deliver Greenspoon’s coup de grâce: Dr. Kilpatrick and Dr. Lipschitz discovered at 3:33 a.m.that August was in trouble, and they got him out by 3:44 a.m. They delivered him in eleven minutes, and that span of time was within the thirty-minute window, so the hospital was not at fault.
Dr. Kilpatrick said under oath in her deposition that she first became aware of a problem at 3:33 a.m. Is it a coincidence that the outside expert’s account synchronized exactly with the one she had given in her deposition?
I recognized this account to be suspect because I was in the room where it happened. Here is what I remember of the morning of March 5, 1999.
After Dr. Kilpatrick re-entered the birth suite at about 3:33 a.m., a short and seemingly casual conversation followed with Dr. Lipschitz about whose heart rate the now-detached fetal monitor had been reading at 2:55 a.m. Given the low numbers, Dr. Kilpatrick quickly affirmed, “Yes, it must have been the mother’s.” The two doctors were completely at ease, exhibiting no sense of urgency. Dr. Kilpatrick took her time as she gowned and gloved up. I remember being impatient with her slowness.
The baby’s head began to crown at around 3:41 a.m. Dr. Kilpatrick went down on one knee between Ilene’s spread legs, and it must have been about 3:42 a.m. that I saw her eyes pop wide open. Her attention suddenly became tightly focused, like that of a pilot when a plane suddenly shows signs of trouble in flight. She called to the nearby team, “There’s an abrasion on the baby’s head!” And then, almost immediately after, she shouted, “We’re going to use the vacuum!”
Dr. Lipschitz and the D & L nurse sprang into action and swiftly readied the gear. Standing again, Kilpatrick positioned the vacuum-extraction device and told Ilene to push, and she obeyed, and then came another order to push, and on the third try there was a great whoosh, liquid gushing, and with a flood of brownish amniotic fluid, the infant tumbled out headfirst. The body that emerged at 3:44 a.m. was gray, limp, and lifeless.
The preceding three paragraphs relate what I recall. Dr. Kilpatrick had said in her deposition that she became aware of a problem at 3:33 a.m. The most charitable construction one can put on this is that she misremembered the time.
Greenspoon’s account similarly did not accord with mine. In any case, the following sentence in Kelly’s letter delivered the blow: “With all of the evidence establishing that August was delivered within 10 minutes of the bradycardia, we cannot establish that U.C.S.F. was negligent in its care and treatment of you and August.”
Our attorney neither suspected anything incongruous in Greenspoon’s finding nor broached seeking a second opinion–of locating another outside expert to review the records. Instead, he unceremoniously dumped us as clients.
The last time heard from Kelly was on August 24, 2004, when we received an unusually terse letter from him in response to our follow up questions. He obviously didn’t want to deal with us anymore.
In the final analysis, the fact that Kelly picked one U.C. employee to review the case of another, another employee he probably personally knew, indicates a mind-boggling level of incompetence. Dr. Kilpatrick, a nationally recognized expert in her field of perinatology, probably was un-sueable because it was going to be difficult to find a medical expert willing to testify against her in court. Even so, Kelly should have found someone from outside the the U.C. system and probably from outside the state of California to review the birth records.
(Now I understand what Dr. Kilpatrick meant when she told Ilene at her six-week postpartum check that the whole August affair was “bad luck.” Yes, it was bad luck. It was bad luck for Ilene to have drawn a delivery doctor who was un-sueable.)
Kelly was our third and last lawyer. The seven-year statute of limitations for birth-injury cases was beginning to run out, and because we were now living on the other side of the continent, we concluded that it would be very hard to locate a fourth attorney from such a distance. So, we gave up. After that, with regard to the legal realm, the rest was silence. Silence, that is, except for the holiday cards that arrived every winter for the next seven years from the law firm of Hersh & Hersh.
The case continues to live on the internet. Go here: August David Chazan-Gabbard et. al vs. University of California Medical Center et. al
Nancy Hersh (in the book Nina Buchanan), is the president of Hersh & Hersh. She was supposed to supervise Chuck Kelly, at the time a junior member of the firm.
AFTERWORD ON DR. GREENSPOON, THE OUTSIDE MEDICAL EXPERT WHO REVIEWED THE BIRTH RECORDS (2012)
After August died in 2013, I did some sleuthing with regard to Dr. Greenspoon and discovered that he came with a provocative back story. In 1995, he wrote a public letter to the pro-life Congressman Henry Hyde in which he passionately defended the controversial procedure known in medical circles as intact dilation and evacuation, or, what pro-life activists were calling partial-birth abortion. Greenspoon had stepped forward to defend a deceased colleague at Cedars Sinai Medical Center who had performed the procedure hundreds of times.
He wrote, “[a] pregnancy that is desired and planned is the foundation for the next generation of productive, healthy Americans. . . . The burden of raising one or two abnormal children is realistically unbearable.” His expertise on the subject of “abnormal” children, he indicated, came from serving as a speaker for a national Spina Bifida association.
In 2012 phone comments made in an interview with commentator Tucker Carlson, Greenspoon stated that he approved of eliminating “babies who don’t have much of a viable life.” He went on to complain that it was unfortunate that the term eugenics had “somehow” taken on a pejorative meaning over time.
Here is a link to a Feb. 21, 2012, article in Slate titled “Eugenics, American Style” speaking about both Greenspoon’s public letter and Carlson’s interview; Greenspoon comes up at the tail end of the piece.
Go here: “Eugenics, American Style”
Greenspoon’s wording in his 1995 public letter and in his 2012 interview is infelicitous for several reasons, but I will focus on just one aspect. When it came to families he claimed he cared about, he certainly didn’t show any concern for ours. His reading of August’s birth records contributed mightily to increasing my family’s “burden of raising” a significantly impaired, or, in his phrasing, “abnormal” child. It made my and my wife’s task “realistically unbearable.” His reading of the birth records effectively thwarted the possibility winning a settlement, something our family desperately needed in order to care for our exorbitantly expensive child. We nearly went bankrupt as a result.
I found it the most difficult to forgive Greenspoon. Unlike Kilpatrick and Lipschitz, who were caught up in the “fog of war,” so to speak, he had the benefit of 20-20 hindsight. He had the advantage of being able to see the whole sorry episode after it was over, and he still acted in the way that he did.
Greenspoon is currently practicing medicine in Springfield, Missouri.
THE STORY MOVES TO JACKSONVILLE, FLORIDA (2001),
AND ENDS WITH THE MEDTRONIC BACLOFEN PUMP (2013)
August moved with his family to Jacksonville, Florida, in 2001 so that I could take a tenure-line teaching position at UNF. Our son’s life was relatively peaceful there, where he attended (click here:) the Mt. Herman Exceptional Student Center during the day. After school and during holiday breaks he went to (click here:) the DLC Nurse & Learn, where I now sit on the board of directors. (To see video and pictures of August, click here: A Boy Named August). His health was so good that he won perfect attendance records year after year at Mt. Herman.
However, on July 8th, 2010, a Medtronic Baclofen pump was implanted into him, and over the next three years this device precipitated a downward spiral that ended in his passing away. The operation to implant it took place at Wolfson Children’s Hospital, which in the book is rechristened Bensalem-Salomon Children’s Hospital. That long name alludes to Francis Bacon’s 1626 science-fiction novel The New Atlantis. The motivation for this allusion has to do with my reconsideration of Enlightenment values, which I speak at length about in the book.
The Medtronic Baclofen pump was supposed to decrease the spasticity associated with August’s cerebral palsy. Since 2010, this device has undergone numerous FDA class 1 recalls due to the many fatalities associated with it. Headquartered in Minneapolis, Medtronic in the book goes under the pseudonym the Hippocrates Corporation of America. The drug Baclofen is relabeled Relaxanoid, and the Medtronic Baclofen infusion pump is spoken of as the Hippocrates Relaxanoid pump.
The Medtronic Baclofen pump was implanted by Dr. Hector James (Dr. Achilles Joyce in the book). In 2003, Dr. James was recruited to run the first pediatric neurosurgery program in northeast Florida. A multimillion-dollar endowment made founding it possible. The internationally recognized Dr. James, originally from Argentina, had been practicing medicine for four decades, much of that time at a teaching hospital associated with the University of California. Having recently retired, he had accepted an offer from the medical school at the University of Florida to come open a clinic at Wolfson Hospital.
He headed to northeast Florida to begin building a program, recruiting other pediatric neurosurgeons from around the nation. His name and reputation were the attraction. And this is how the area’s first Medtronic implantable infusion pump program came into existence. The Medtronic Baclofen pump seemed to be a piece of science fiction wizardry come true. Over time, Dr. James turned Wolfson into a mill for implanting them.
I have heard through the grapevine, but haven’t been able to verify, that Dr. James has retired and that Wolfson Hospital no longer implants Baclofen pumps.
Dr. Louise Spierre becomes Dr. Lisa Sandemelir in the book. She is one of the doctors Dr. James recruited to move to Jacksonville, and she was August’s physiatrist. Oral Baclofen and Botox injections under her direction had been doing the job of controlling August’s spasticity quite nicely. But after a year or so of this regimen, she changed her tune and started strongly advocating that we have a Medtronic Baclofen pump implanted. She told me that the pump was reasonably safe, almost as safe as riding in an airplane.
At one point I met with the rep from Medtronic. He looked at me straight in the eye and assured me that the pump was a safe product. If Ilene and I decided to go forward with it, he went on, he personally would accompany us “on each step of the journey.” Everything would go well–he would “make certain.” He would “see to it.” We shook hands.
At the time I didn’t know that these reps for medical device companies make very comfortable six-figure salaries. They often don’t have any medical training, but they still stand beside the surgeon in the operating room and tell him or her what to do.
I also wasn’t aware that the hospital made a good profit on pumps due to an astonishingly high mark-up over what it paid Medtronic for them.
Now retired, Dr. Stephen Lazoff, August’s pediatrician, advised us against implanting the Medtronic Baclofen pump; he is identified in the book as Dr. Stephen Cohen. Leading up to July of 2010, he strenuously and passionately warned us about the complications that could ensue from implanting it: the problems to expect, he told us, were infection and problems in the back. “I have seen so much go wrong,” he said. So, I cannot say that we weren’t informed of the danger beforehand. But Dr. Lazoff seemed a little bit “old school” to us, so we didn’t take his advice as seriously as we should have.
Ilene and I pondered the move deeply. Because we wanted the best for our child, and because we did not want to leave any stone unturned, we finally agreed to follow Dr. Spierre’s recommendation, and so the pump was implanted.
The Medtronic Baclofen pump was a disaster from the very start. For the next three years, adverse events kept piling up. The first pump became infected. After it was removed and another put in, dystonia took hold. When things went south, the Medtronic rep bailed on us. We never saw him. Off and on for three years, August was stoved up with dystonia. This video shows what the condition looked like. Warning: it is difficult to watch.
/ Alternative link /
With regard to dystonia, Dr. Spierre didn’t seem to think that her role or the pump had anything to do with what he was going through. Her job, she indicated, was to manage the pump, nothing more. August’s arching wasn’t her problem to solve.
At various points, doctors at Wolfson Hospital approached me privately and informed me sotto voce that implanting Medtronic Baclofen pumps often didn’t turn out well for the patients but that implanting them had become a “profit center” for the hospital. As a consequence, the place had turned into “a mill.”
We should have listened in the beginning to Dr. Lazoff because the dangers he alerted us to did in fact came to pass. August died in Ilene’s and my arms at Wolfson Hospital at 2:20 a.m., October 15, 2013.
TECHNO OPTIMISM AND THE IDEOLOGY OF CURE
As with Dr. Kilpatrick and Dr. Lipschitz, Dr. James and Dr. Spierre were not villains. A few people I know in the patient-safety movement want to demonize all doctors, but that hardly gets at the truth. At bottom Spierre and James were operating from good intentions, trying to do their best to serve children.
Where they erred was in allowing themselves to be misguided by their own techno-optimism and positivistic belief in the ideology of cure. As Eli Claire writes in his 2017 book, Brilliant Imperfection: Grappling with Cure, cure only sometimes saves lives. “Cure [also] manipulates lives; cure prioritizes some lives over others; cure makes profits; cure justifies violence” (xvi).
Those interested in reading more about the issues my son’s case raises regarding the Medtronic Baclofen pump would do well to read Jeanne Lenzer’s 2017 book The Danger Within Us: America’s Untested, Unregulated Medical Device Industry and / or view the 2018 Netflix documentary about the medical device industry, The Bleeding Edge.
THE DÉNOUEMENT (2020)
Over twenty years have elapsed since August’s birth. My friends’ children born around the same time are now completing college. Solving the mystery—of what happened on the morning of March 5, 1999—has become irrelevant. At the time August was born I didn’t know that he would develop into a beguiling little fellow, that he would elicit great love from us and from many other people, or that like a Yaqui shaman he would introduce me to a separate reality. And I didn’t know that this separate reality was actually the world of my own heart, my capacity to give and receive love.
In light of how he helped me grow as a person, how he served as my spirit guide, I don’t care now who made what mistake at his birth. I started out in anger, wanting to burn down the house of medicine, but I have arrived at an unexpected place. August taught me to see the spirit, first in him, then in my fellow human beings. If I could see it in him, then I should be able to see it in the doctors. So, it is time to forgive them, as I myself would want to be forgiven for my own errors and omissions.
Who among us doesn’t go into the courtroom of life demanding justice, only to find themselves humbled and pleading for mercy?
Incipit vita nova
August’s story is told in greater detail in the book A Life Beyond Reason: A Disabled Boy and His Father’s Enlightenment (Beacon Press 2020)
Praise from Sandra M. Gilbert, author of Death’s Door and co-author of The Madwoman in the Attic
“A poignant, powerfully written story of a radically mismanaged delivery at a major medical institution as well as the painful yet paradoxically luminous consequences of that catastrophe. Simultaneously a timely exploration of medical error, a moving disability memoir, and an elegy for the blithe spirit of a much-loved child, Gabbard’s book will be must reading not only for investigators of medical malpractice and theorists of disability but also for all who are awed by the intensity of parental devotion.”
Praise from Mark Woods, author of Lassoing the Sun (Thomas Dunne Books 2016)
“Chris Gabbard’s story of his son August’s life will leave you thinking about fatherhood, modern medicine, philosophy and the very definition of being alive and human.”
Praise from Elizabeth McKenzie, author of The Portable Veblen: A Novel (Penguin 2016):
“It’s hard to speak highly enough about the unforgettable book Chris Gabbard has written about his disabled son’s life and the medical-industrial complex that tested Gabbard’s family beyond what any of us can imagine having to endure. This gorgeously eloquent memoir is excruciating in its impact and is one of the most moving, troubling, and ultimately rewarding reading experiences I’ve ever had.”
Available in audiobook, hardback, softcover, Kindle, and Nook