My contractions were three minutes apart. I knew it was time to go to the hospital—this fourth baby wouldn’t wait much longer. Suddenly, my husband ran into the room. He was white, and the look in his eyes told me something was horribly, horribly wrong.
“Something’s wrong with Bethany,” he choked.
As fast as my laboring body would allow, I followed him to my four-year-old daughter. What I saw made me forget my labor pains.
Bethany’s eyes were rolled back, half of her body hung limply, her breathing was irregular, and she was covered in vomit. My mind reeled in shock and confusion. The last time I had checked on Bethany in the middle of the night, she was fine. What happened to my healthy little girl overnight?
My husband frantically dialed 911. While he boarded the ambulance with Bethany, I scrambled to make arrangements for my other two children. We quickly decided that my in-laws would take me to the hospital when our sitter arrived. The ambulance siren soon announced to the world that our lives were forever changed.
On the way to the hospital, I felt a vulnerability I had never experienced. When your children are born and pronounced healthy, you feel the relief that you are home-free. You count the fingers and toes and know that you dodged “the big one.”
My illusion of happily-ever-after was shattered in an instant. I faced the bleak realization that this was the anniversary of my mother’s death, and I fought the fear that Bethany, Mom’s namesake, might also die. And somewhere in the distance, the contractions pounded.
“Your daughter had seizures all the way to the hospital,” the paramedic said as she met me at the emergency room doors.
“Seizures?” I numbly followed the paramedic to my daughter’s cubicle, where she lay motionless on a sterile bed as unknown fluids dripped into her arm. I turned to breathe through another contraction, and the E.R. nurse hurried to my side.
“Are you okay?” she whispered, eyeing my pregnant body.
“Yeah, my contractions were three minutes apart the last time I checked,” my voice trailed off. How long had it been?
“You mean, you’re in labor?” she almost yelled, grabbing a wheelchair.
As the nurse wheeled me to Labor & Delivery, I carried the image of Bethany’s still form. I wasn’t sure I’d ever see her alive again.
“Tell me about your daughter,” my obstetrician said as he walked in the labor room and took my hand. Through sobs, I told him what little I knew.
“Okay, you’re going to have a baby today. I’ll do what I can to make you as comfortable as possible so we can get you downstairs with your daughter, where I know you want to be.”
Aside from the pain, labor rooms are usually somewhat pleasant places. My three previous births had been warmly memorable, with nurses speaking in excitement, sharing my anticipation. This time, however, a somber mood prevailed. Nurses worked quietly around me as I cried. I longed to be with Bethany, yet, I felt trapped inside a body that had other plans.
My husband appeared a few times to fill me in on the latest tests they were running on Bethany. An E.R. nurse came and sat with me during part of the labor. Even my obstetrician went downstairs to check on Bethany for me.
When the anesthesiologist walked in to give me the epidural, I froze. My eyes locked on her nametag, remembering that she had botched an epidural on a hometown coach’s wife—the woman was now severely disabled and had probably never held the baby she gave birth to that day.
What else could happen on this day?
For a brief second, I almost refused the epidural, but I was too emotionally drained to face another conflict. So I quietly followed her instructions as she began the procedure.
I had an allergic reaction and broke out in hives, but was relieved to find out it wasn’t life-threatening. The anesthesiologist felt so sorry for me that she gave me more anesthesia almost every time I whimpered. By the time my baby was born, even my earlobes were numb.
We knew the baby was a girl before the doctor made the pronouncement, because the name we had chosen was perfect for this day, this birth, and the new life now assigned to us. We named our baby Grace.
Later that evening, after the epidural wore off, I was walking down the hall when I saw her. Bethany. She was running down the hall toward me, and a family member followed, desperately trying to keep up with the I.V. stand.
Bethany held up the arm where the I.V. was attached and said, “Look Mommy, I have a hurt arm.” She had no memory of the early morning events. I was so relieved to see her that I was more than eager to dismiss the tormenting questions I had faced all day.
The next day was Saturday, July the Fourth, and Bethany and I were both released, with a vague statement from Bethany’s doctor and instructions for the anti-seizure medicine he had prescribed. He didn’t really know what had happened, but test results would be in by Thursday.
Over the weekend, I numbly watched Bethany. One eye drooped, she tripped and bumped into things, and slept a lot. Her speech slurred. She wasn’t the same. During one of her naps, I lay next to her, watching her breathe, crying for the daughter I seemed to have lost. When I crawled into bed that evening, Grace began to cry. I looked at my husband and said, “Oh, yeah, we had a baby this weekend.”
Five days is a long time to wait when your child’s condition is unknown. Finally, we got the news.
“Your daughter has abnormal brain wave patterns that are consistent with a seizure disorder. Her seizures started in the left frontal lobe and spread throughout her brain.” The doctor went on to give more instructions about medication dosages, and then he was gone.
I still didn’t know what Bethany had. But I was too stunned and confused to ask questions. When the phone began to ring with inquiries from concerned friends and relatives, I numbly repeated the doctor’s words. The question was always the same.
“You mean, like epilepsy?”
My answer was also the same, “I don’t know.”
The answers came when I talked with a friend who was also a nurse: seizure disorders and epilepsy were the same thing. She loaned me her neurological nursing books, I called the local epilepsy association to ask for literature and, finally, began to understand what had happened to my daughter.
Epilepsy. We never thought it would happen to us.
The glossy pages of the pamphlets assured me life would be normal after we found the right medicine for Bethany. During our first office visit, the neurologist affirmed my optimism. Concern over the long-term use of medication and the side-effects prompted me to ask about an obscure diet, the ketogenic diet, mentioned in one of the epilepsy pamphlets.
“Oh, no. It won’t work on her type of seizures, and unless a child is so debilitated that they are in a wheelchair or on a feeding tube, you can’t keep them on it. Apart from the seizures, your daughter is as normal as pie.” End of discussion. I believed my doctor knew best.
If only I knew then what I know now. If only.
We began what became a two-and-a-half year search for the medicine that would make our lives normal again. Bethany bounced from medication to medication, while seizures increased in frequency and severity. Traumatic blood tests, doctor visits, medication adjustments, and long-lasting seizures claimed our lives.
Side-effects of the medicines were more than bothersome—nausea, vomiting, drowsiness, slowed brain functioning, and memory loss turned Bethany into a little zombie. I remember the horror of washing Bethany’s hair one night and finding my hands covered with mats of her beautiful auburn hair. Hair loss was the most dramatic reminder that we had said good-bye to a former life.
A few of the seizures were severe enough to stop Bethany’s breathing, causing her to turn blue, then ashen white. During one seizure episode, I stood in horror and watched as my husband cradled Bethany, crying out to God, because he thought she had died in his arms.
One unique aspect of Bethany’s seizures is that they happened only during her sleep, which meant that we didn’t get much sleep. Many times, I climbed into bed as my toddler and preschooler appeared at my bedroom door, clamoring for breakfast.
For me, survival was a box of granola bars on my nightstand.
We were crushed when the educational diagnostician pronounced a bleak outlook for my once “normal-as-pie” daughter. The prolonged, severe seizures and heavy medications had taken their toll, resulting in devastating damage. We trudged out of the expert’s office, burdened with a new set of dreaded special needs labels.
The lowest point came during a routine neurologist’s office visit. None of the medications in his arsenal had worked. Bethany was protocol for a new compassion study—she was an approved guinea pig for medical research. She had already been on an experimental drug the previous year—but the doctor yanked her off when the kids started dying. Understandably, we weren’t comfortable with this new drug study.
“Somewhere down the road, we’re looking at going in there and plucking out the problem areas,” the doctor commented as I sat, stunned. Our doctor spoke of brain surgery as if it were a simple tonsillectomy. We refused his options. Instead, we insisted on being referred to a Johns Hopkins Medical Center affiliate to begin the ketogenic diet treatment for epilepsy.
During the previous months, we had researched the ketogenic diet and had renewed hope. The statistics published by Johns Hopkins were amazing. After two years on this bizarre high fat, low carbohydrate diet, over 30 percent of the kids were drug-free, diet-free, and seizure-free. This diet went beyond controlling seizures—in some patients, it was a cure for pediatric epilepsy! In cases of difficult-to-control epilepsy, none of the drugs had the same track record.
At best, the drugs offered a 10 percent chance of control. Yet, our doctor had insisted on drugs, and in his bias, he never offered the diet as a realistic option, dooming Bethany to live with the consequences of his decisions for the rest of her life.
Bethany began the diet in a Dallas hospital a few weeks later. She had a seizure episode the night before she began the diet. The diet began with a 24-48 hour fast. Then, the ketogenic meals were gradually introduced over the following three days. The diet changed metabolism from burning carbohydrates for energy to burning fats for energy.
The diet was bizarre—meals consisted of 80-90% fat. No sugar. A typical meal contained what amounted to a small dollar-sized hamburger pattie, five grapes, a half-stick of butter, and a half-cup of heavy cream. Snacks were limited to four pecan halves daily.
But it wasn’t as simple as a spoonful of bland veggies or a cup of diet soda. Every bite and every drop was measured to a tenth of a gram. Food was calculated in a four-to-one ration of fats to protein-carbohydrate combination. And the protein-carbohydrate ratio was figured at two-to-one.
The ketosis made Bethany nauseated and weak. In addition, the diet interacted with the anti-seizure medication she was taking, resulting in liver damage and threatening her life. But her liver gradually recovered, and, incredibly, she didn’t have any more seizures.
Six weeks later, I received a phone call from our former doctor’s office. The nurse practitioner inquired about Bethany’s condition on the diet. “Oh, you won’t believe it,” I said. “She’s been seizure-free since the night she entered the hospital.”
Expecting a “hurray!” I was stunned to hear her next words.
“Oh darn! We really wanted Bethany to be on this next drug study—you were always so good about taking perfect notes and doing everything exactly as specified. We knew we’d get good accurate results with you.”
I was too shocked to say anything. The drug studies built the doctor’s career. That’s what my daughter was to him—a career stepping stone, a human guinea pig to authenticate his drug studies. My daughter paid a huge price for his success—she paid with her former life, the life that might’ve been.
Six months later, she was completely weaned off all medications and still seizure-free. Two years later, we prepared to wean her off the diet. The EEG was scheduled to confirm that she had normal brain wave patterns. Then the unthinkable happened.
Five days before her weaning was to begin, she woke up in status epilepticus—non-stop seizures. She somehow ate sugar the night before at our Valentine’s party—her diet soda got mixed up with someone’s regular soda, and the carbohydrates pulled her out of ketosis.
Bethany was careflighted to a Dallas hospital with explicit instructions not to give her sugar of any kind—no glucose or dextrose in the I.V. I said no sugar so many times that I knew they thought I was just a hysterical mother. And I was.
We desperately fought the Dallas traffic to get to the hospital. An hour and ten minutes after she had been airlifted, we walked into her pediatric ICU cubicle. My eyes zeroed in on the I.V. bag. In bold letters, I read, “DEXTROSE.” Sugar. While I couldn’t believe the ineptness of the medical care, the doctor apologetically explained that the majority of the patients in the emergency room are routinely administered glucose. He didn’t admit that no one took the time to read her chart when she arrived.
Once again, Bethany had to fast and endure the nausea of changing her metabolism to ketosis. She was released the next afternoon with a vague “We don’t know what happened.”
The confusion I felt five years earlier when Bethany first went to the hospital flooded over me. What was happening? This couldn’t be happening. Not now. Just five more days and we would begin to put epilepsy behind us. Bethany would be “cured.” That’s what was supposed to happen. Just five more days.
“If we take her off the diet now, she would end up in the emergency room again,” the doctor solemnly said over the phone as he went over test results with me. “We need to go at least one more year.” Devastated, we continued the rigid diet.
Sometimes maintaining the diet was almost overwhelming. Like the time our family traveled to England for over three weeks. Changing planes, trains, and buses in a foreign country with little access to food with accurate food labels was a challenge. And the time we drove past Taco Bell and Bethany sighed wistfully, “Mom, I think I remember what tacos taste like.” And the dinner at Olive Garden when she looked at the mints wistfully and started crying.
In the past, I might’ve said, “It won’t be long, honey, hold on a little longer.” But now I didn’t know what to say. I really didn’t know if she would ever be off the diet. So I cried, too.
We went in for the EEG the following year. Her EEG was so abnormal the doctor gave us little hope about coming off the diet. We continued with the crazy diet, because she didn’t have seizures, and no alternative offered the same seizure control. But we longed for the elusive cure.
In the fourth year of her diet, we neared the time of her scheduled EEG. I was afraid to hope that anything would change, because we couldn’t endure the disappointment again. I prayed, as I had done throughout our seven-year ordeal with epilepsy. I walked into the doctor’s office, not hopeful, but not hopeless. I was empty of all expectations. I simply trusted God to take care of us, no matter what the outcome of Bethany’s tests. I knew I could trust our God even if it meant a lifetime of epilepsy.
“You want to hear the results of the EEG?” The doctor’s voice sounded almost jovial.
I nodded without saying anything. This was routine.
He looked at the chart, and then looked at us, one at a time, smiling. “It’s completely normal.”
The doctor went on to detail the six-month diet weaning process and to give instructions for emergency care, while I sat, trying to process the word normal. When I could finally speak, I asked, “Um, when do we need to schedule our next appointment?” For seven years, doctor appointments had been a routine part of our lives, and that was all I knew to say in that moment.
“Never,” he said, looking me directly in the eyes.
“Never?” I barely whispered.
“Never. No more doctor visits, no more blood tests, no more diet, no more seizures. No more epilepsy. Never. Your daughter is cured.”
We had plodded through the ketogenic diet, not knowing what to expect or hope. Four years and two months of the strict regimen—a total of 4,563 meals, all carefully planned and weighed to one-tenth of a gram. Every bite of butter eaten, and every drop of heavy whipping cream consumed. My daughter never complained—she simply did what she had to do.
We continue to participate in local epilepsy programs, and my heart grieves when I see families still looking for the elusive cure. Many have never tried the diet. I’m so glad that we didn’t shrug it off as quackery or dismiss it for being too difficult. 4,563 meals are nothing compared to a lifetime of seizures.
Adapted from an earlier article by Jayme Durant, published in 2000.
