Acute Illness Features

When A Parent’s Medical Intuition Is Right

Doctors can be quick to dismiss the gut instincts of a caregiver, but there's a lot more to parent's intuition than meets the eye, as these stories show.

“In nursing school, they literally tell you never to question a doctor,” says Becky McKeown, a nurse.

But after her eight-year-old son, Isiaah, spent two months having his persistent cough misdiagnosed as everything from strep to tonsillitis, Becky listened to her intuition. She pushed for a chest X-Ray against her doctors wishes, revealing a dark shadow on his lung resembling a penny.

“They came in and said we have good news and bad,” remembers Becky. “The good news is, it’s a peanut. The bad news is, we need to put him on life support now.”

A bronchoscopy was scheduled to clear the peanut out, which had been there for at least a couple of months. Even so, Isiaah ended up with recurrent lung infections for the next year, and could possibly have died if the peanut had not been discovered when it was.

The lesson? “Always trust your Mommy Gut,” says Becky.

Isiiah and his older brother, post-procedure.

When Intuition Knows Best

“When the mommy alarm goes off, you have to listen,” says Pediatrician Natalie Lambajian-Drummond, MD, of Whole Child Pediatrics in Yorkville, Illinois. And that goes for Daddy Alarms too.

In medical school, Dr. Lambajian-Drummond says, her mentor told pediatric residents the two most important things they needed to know were how to pick the sick child out of a crowd and to always be humble and listen to parents.

“When the mommy alarm goes off, you have to listen.”

That nagging voice, whether it’s shouting or even whispering, is usually important. And while doctors and other medical professionals might not want to listen, countless parents have discovered that their intuition is something to pay attention to in a medical crisis.

Molly Spencer and her son Andy.

Know When To Insist

Take Molly Spencer of Detroit, MI. For several weeks, Molly’s nine-year-old son, Andy, was spiking high fevers and complaining of back pain. His pediatrician ordered several ultrasounds of his back and abdomen, all of which were normal. The day after the latest normal ultrasound, he spiked another high fever and Molly took him to the ER at a nearby university hospital. After taking his history, they said they weren’t going to order another ultrasound.

“I insisted,” she says. “I just had a feeling.”

“I feel like listening to my gut and insisting may have saved my son’s life.”

The doctors relented. This ultrasound was not normal. It showed a large abscess in Andy’s kidney that had grown into his psoas muscle. After being  admitted into the hospital for a few months, and then having surgery to correct the abnormality that caused the abscess, Andy is now in good health, although will require close supervision from a urologist through the rest of his life.

“I feel like listening to my gut and insisting may have saved my son’s life,” she says. “He could have died if the abscess had burst.”

What Is Intuition?

It’s easy for a doctor to dismiss a parent’s intuition as distracting at best, and superstitious at worst. But there’s a lot more going on with a parent’s intuition than may at first meet the eye.

“It’s a rapid pulling together of what we know into a ‘gut feeling’ about what’s going on or what we should do,” says Psychologist Eileen Kennedy-Moore, author of Kid Confidence: Help Your Child Make Friends, Build Resilience and Develop Real Self Esteem.

According to Dr. Kennedy-Moore, a parent’s intuition is more than just guess-work. It grows from all the experiences a parent has caring for a child, coming together into a subliminal understanding of their wants and needs that allows a parent to quickly assess a situation and know how to respond.

Research would seem to agree.

According to a study at American Friends of Tel Aviv University’s School of Psychological Sciences, researchers found when participants were forced to choose between two options based on instinct alone, the participants made the right call up to 90 percent of the time. And in a study at the Boston College Carroll School of Management, researchers found that intuition was a more reliable tool than analysis when a participant already had in-depth knowledge of a given subject.

When To Know You’re Right

Eight-year-old Payton Micther wouldn’t be here today if not for her mother Miranda’s intuition.

Payton Wachter as a newborn, before her Wolff-Parkinson-White Syndrome diagnosis.

Born healthy, Payton was barely a month old when Miranda noticed a change. She was sleepier than normal and barely wanted to nurse. Miranda felt a growing sensation of dread, but her friends and family chalked it up to the anxieties of a first-time mom.

Then Miranda had a vision, of her dead mother telling her: “Don’t listen to them. You’re right.”

Miranda woke up with new resolve. Against the advice of her (now ex) husband, Miranda called the pediatrician. As soon as she said ‘lethargic’, Payton and her mother stepped into a whirlwind, from the pediatrician’s office to an ambulance to the ER.

Payton today.

It turned out that Payton’s heart was enlarged, and she was in heart failure. Doctors told Miranda that if she’d waited even another couple hours, Payton might have died in her sleep. She had Wolff-Parkinson-White Syndrome, a disorder that causes problems in the electrical signaling used to keep the heart pumping.

Miranda was right not to listen. She was right all along.

The Touch of an Angel

Sophy Burnham,  best-selling author of The Art of Intuition, calls intuition an instantaneous, unreflective apprehension: a sudden knowing that falls with conviction based on no logic or analysis.

“[Intuition] is what I call the tap of an angel’s wing.”

“It is what I call the tap of an angel’s wing,” she says. And it’s important for any parent to listen to its signs: he subtle hunch, the twist of the gut, or any other inexplicable sense of disturbance is probably your intuition trying to tell you something.

It’s always better, she says, to listen to your gut. What’s worse: the embarrassment about being wrong, or a lifetime of regret when your intuition told you something about the health of your child… and you didn’t listen?

Mother Knows Best

When her first son, Gavin, began projectile vomiting after every feeding, Shannon Smyth called her pediatrician, but he assured her everything was fine. “At first it made me question myself,” she says. “Did I just see milk fly across the room? I just knew this wasn’t right.”

Gavin and Shannon Smyth.

But Gavin’s spit-up problem only got worse. At an appointment with her pediatrician, Shannon brought up Pyloric Stenosis, a stomach abnormality that ran in her family. Her pediatrician assured her the condition was not hereditary, and suggested the problem might be overfeeding.

By four weeks old Gavin was projectile vomiting consistently. He also seemed to be hungry and miserable. Eventually, she brought Gavin to the ER for an ultrasound. Sure enough, he had Pyloric Stenosis.

Gavin went to surgery, while Shannon transferred to a new pediatrician. But several years later, Shannon’s third son, Duncan, began projectile vomiting just like Gavin had.

New doctor. Same story. Duncan’s pediatrician just didn’t believe her intuition could diagnose her own son.

“I didn’t give up. I just knew it was happening again,” Shannon says. “I wasn’t going to let Duncan go as long as Gavin did being in pain.”

“‘Just listen when a mom tells you she knows in her gut that something is wrong with her child..”

Frustrated, her pediatrician finally relented, sending Duncan to a specialist. Duncan’s upper GI test was barely over before the tech handed Shannon a call. It was her pediatrician, apologizing. Duncan too had Pyloric Stenosis.

Unlike the first pediatrician who doubted her, Shannon decided to accept her doctor’s apology, and stick with his practice.

“He now refers to me as a seasoned mother,” she laughs. “But I always tell him, ‘Just listen when a mom tells you she knows in her gut that something is wrong with her child.’”

Acute Illness Q&As Rare Diseases

Sepsis, Rocky Mountain Spotted Fever, And Me

Jennifer Hohman thought she was bitten by a flea. It was a tick. Next thing she knew, she was fighting for her life.

Last summer, Jennifer Hohman couldn’t shake a fever of 103. A red rash popped up on her arm and stomach. She was clammy, weak and pale. Days later, her blood pressure fell to 60/30 and medics rushed her to the intensive care unit of her local hospital in Houston, Texas. Her liver and kidney were shutting down. She was put on life support.

She had developed sepsis, a condition where the immune system mistakenly attacks organs as it tries to fight off an infection. But, doctors wouldn’t discover the real reason behind her symptoms until days and dozens of tests into her frightening hospital stay: Rocky Mountain Spotted Fever.

It’s the deadliest tickborne disease in the world, and untreated has a death rate of over 80 percent. In addition to high fever and chills, it can cause confusion and other neurological changes. The diagnosis came as a shock to Hohman, who lives in a somewhat rural area outside the city, but hadn’t been hiking or camping in the woods. She credits her husband with saving her life. It was Kip who remembered Hohman had been bitten by a flea two weeks prior, and he made sure her doctor knew. Desperate to keep her alive, Hohman’s doctor started treating her for flea-borne spotted fever. Luckily, the same medication is used to treat Rocky Mountain Spotted Fever.

Doctors finally correctly diagnosed Hohman, and now, she’s back to her old self. She believes she’s still alive in part to continue the crucial work she does in helping human trafficking survivors; Houston leads the nation in cases. Hohman created Houston Area Against Trafficking, a network of nonprofit organizations, and the Houston 20, a group of influential Houstonians, to raise money to support survivors. Less than a year after surviving Rocky Mountain Spotted Fever, she was in the White House as President Trump signed H.R. 1865 into law, which combats online sex trafficking.

You nearly died from Rocky Mountain Spotted Fever. Can you tell us what it was like when you first got sick?

I started to feel clammy and feverish. It was July 3 and I had a party the next day and I wanted to drink. So, I figured I should go to the doctor. I had a fever of 102. My GP tested me for strep and the flu and they were both negative. He said it was probably a virus, take Tylenol, stay hydrated and call if you’re not better.

I remember saying things I didn’t understand. It was like I’d turned into the woman from The Exorcist.

A few days passed and my temperature was at 103. I went back to my doctor and he gave me fluids and antibiotics. The fever wouldn’t go away, so a few days later he sent me to the ER. I was feeling like hell. I was drab, miserable. They did a cat scan, took blood and said, we can’t find anything. They sent me home with another antibiotic and the number for an infectious disease specialist.

A couple of days later, I started losing my lucidity. I was talking really loud, and I remember saying things I didn’t understand. It was like I’d turned into the woman from The Exorcist.

How was it in the hospital when no one had any idea what was wrong with you?

I was fighting with the nurses. They had to strap my hands down to the bed. I broke a restraint. I’m cussing a nurse out, but at same time I’m thinking, she’s so nice and beautiful. No one really knew what was going on at that point. They asked if I’d taken drugs. I kept asking them, what are you doing to me?

They gave me sedatives to calm me down so they could start doing tests. They put electrodes on my head in case I had a seizure or heart attack, and a port in my neck so any medicine could go right to my heart. They also did a spinal tap. One morning, they called Kip and said I was having trouble breathing, and they wanted to incubate me. He gave permission over the phone to put me on life support. I was in a sedated coma. They told him, you need to get your family here. Whoever wants to see her, come see her now. My organs were failing, I was dying.

Hohman, her dogs, and her family.

What was it like when you woke up and started improving?

I woke up still tied to a bed. I was able to have thoughts at that point and I recognized people, but I was still so confused. They didn’t know what it was until day five. The infectious disease doctor said, it’s not from a flea, it’s from a tick. I’d never seen them around our house, on our dogs. I have no idea when I was a bitten by a tick. It was a miracle Kip thought to mention I’d been bitten by a flea a few weeks before. The doctor actually listened and they started treatment for flea-borne spotted fever. Had he not listened, and waited until all of the lab results came back, I could have been dead. They never found a tick bite on me.

They never found a tick bite on me… Had he not listened, and waited until all of the lab results came back, I could have been dead.

How was your recovery?

My doctor told me I could lose my fingers and toes because of septic shock. I was having these conversations with God—what more do you want me to do with my life? I had to do physical therapy to be able to walk. I went home with a walker. And, for a while I was losing my hair. The doctors said it was all the medicine and the bacteria dying off.

For the first couple months I slept all day long. For two to three months I had high blood pressure, and I lost 30 pounds. But, I also had tons of love and friends and family taking care of me. People came over every day. I had the three F’s: friends, flowers and food. Almost every day one of the F’s showed up, if not all of them. I lost five months of my life, but now it’s as if nothing ever happened.

It taught me not to be afraid of dying. If I go I go.

How did this experience change you?

It taught me not to be afraid of dying. If I go I go. I’ve skipped death a couple times. When I was 9, I survived a brain stem tumor. My family knows I love them. My friends know I like to enjoy life. If I lived my life right, they’re all going to have good memories of me. It also really drove home that what matters in hospitals is how doctors listen to their patients and families. If you don’t listen, it can be a matter of life and death.

Acute Illness Diabetes Q&As

The Rusty Nail That Almost Killed Me

Three years ago, Michael Porter went into a coma and almost died. Now with one less arm, he wants to educate the public about the dangers of sepsis.

After he scraped his hand against a nail while he was repairing his garden gate at his home in 2015, Michael Porter didn’t think much of it. Living just outside of Lancashire, England, the 45-year old university professor simply washed the bruise and stuck on a Band-Aid.

72 hours later, he was in a coma.

Porter had developed sepsis, an extreme illness in which the immune system ends up injuring bodily tissues in organs as it tries to fight an infection.  It affects about 30 million people a year worldwide, killing almost a quarter of them, and leaving the rest with physical and mental scars.

Three months later, Porter woke up, but didn’t make it out of his coma intact. His arm had to be amputated, and he spent the better part of the next year fighting his way back to health.

What was ironic about Porter’s battle with sepsis is as a biology and genetics professor, Porter had lectured on the dangers of sepsis.

Now, three years later, his personal struggle with sepsis has transformed his understanding of the condition and how heapproaches life itself. We spoke to Porter to learn more.

You contracted sepsis after you scraped your hand against a nail. Can you tell us more about what you were doing?

It was Christmas Eve, 2015 and I had some spare time and a chance to knock another job off my to-do list. The garden gate was not closing correctly, so I went out and spent an hour getting it fixed. It was the last DIY job I ever did with two hands.

It was the last DIY job I ever did with two hands.

I scraped my hand on a nail and got a minor cut which bled and was washed out but was really just a minor nick, that people working with their hands probably get on a daily basis.

What were you thinking as your condition worsened? Did you ever think you might have sepsis?

While I had taught people about sepsis in the past, I was cursed with the typical thought that ‘it only ever happens to other people’, but this time I was the other person.  The onset of sepsis can be very rapid, in my case about 48 hours, and by the time my condition had got serious, it was moving very fast indeed. By that point, I wasn’t thinking clearly anymore. That’s why often the people who spot sepsis are the family or friends, not the patient.  In my case, I owe my brother my life, because he spotted that it could be sepsis and the whole family rushed me to the ER.

I sometimes like to think of [sepsis] as a match being lit.  There is a tiny spark at the type of the matchhead, which then spreads out getting faster and faster until the whole match is consumed

The first sign was the muscle pain. I had a sore armpit that I put down to a new deodorant I’d used that morning.  In reality, it was necrotising myositis: my muscle was literally dying and, as the muscle was breaking down, it was poisoning my body further.

As the sepsis progressed, I started showing more of the classic signs. I had extreme shivering, and stopped passing urine. My skin only became mottled and discolored in the hospital, but by then, I was more concerned about the confusion and extreme breathlessness.  I really was dying.

It was months then before I re-emerged from my coma, at the end of March.  In the meantime, my wife and family had been told that I probably wouldn’t make it past the first night.  They had watched me be resuscitated several times because I was in multiple organ failure with artificial respiration and dialysis.

They said goodbye to my arm and gave permission for the amputation, not knowing if it would even save my life.

How did you feel when you first emerged from the coma? 

There’s an expression: “I’d give my right arm for that.” Well, I gave my right arm for life. Seems like a fair exchange.

When I first emerged from the coma, I was very confused, but became very quickly aware of my missing arm, even though I could still feel it… and can, in fact, still feel it to this day.

Having been told that the amputation was life-saving, I thought: well, I’m alive and I’ll manage. I always work on the principle that what you can’t change, just accept and look to the positives.

There’s an expression: “I’d give my right arm for that.” Well, I gave my right arm for life. Seems like a fair exchange.

 

A man with one arm and a woman wearing a white wedding dress standing outside a church door on their wedding day.

Michael Porter on his wedding day.

What was rehabilitation like? What was the hardest part?

Waking up from a 3-month long coma, I had lost 82 pounds in weight and had almost no muscle strength left.  Even pressing the nurse call button was too much for me, at that time. From there I had to begin a long process of strengthening my muscles and re-learning to walk.

Walking was particularly difficult as I only had the one arm to support myself with and peripheral neuropathy meant that the sensations coming back from my feet and hands were confused or absent.

Amazing support from a range of physiotherapists allowed me to rehabilitate and begin to move and then walk again.  Even to this day, however, peripheral neuropathy and muscle weakness continue to haunt me. Yet I still consider myself very lucky as amongst the 40% of people who have ongoing problems, as a result of sepsis, my problems are minimal in comparison.

Perhaps the hardest part of my rehabilitation was psychological, rather than physical. Losing a limb feels like a personal bereavement because, even excluding vanity, we all have an image of our self and this includes (for most people) 2 arms and 2 legs.

Being able to look at myself in a mirror, even with a shirt on, took a long time. It took even longer for me to be able to touch what was left of my arm. Thankfully the British National Health Service ensures that psychologists work hand-in-hand with physiotherapists and prosthetists to help people who have undergone amputation.  They also help me with the PTSD which is commonly seen in sepsis survivors and their family.

You’re actually an expert on sepsis, can you tell us about how and why people develop the condition?

The important thing to remember is that sepsis is not caused by any one bacteria or virus. It’s an overreaction by the body to infection, which rapidly escalates. That’s why good stewardship of antibiotics is so important, as they are the primary treatment when sepsis is diagnosed. Without them, a very large proportion of the 30 million people who get sepsis annually, across the world, would die. As it is 6 million will die, with about a 1/3 of them being children. 40% of those who survive will still have ongoing problems, as a result of the condition.

Who will get it and when is still a mystery, which is why scientists like myself continue to work on this problem.  There are suggestions that aspects such as vitamin D levels may have an impact, but this research is still at an early stage.

The important thing to remember is that sepsis is not caused by any one bacteria or virus. It’s an overreaction by the body to infection

Unfortunately, while it may be possible to treat the original infection with antibiotics, there is no specific cure for sepsis” only the symptoms can be treated. New research, however, shows that metformin, a drug used to treat type 2 diabetes, can reduce the impact of sepsis by limiting the body’s immune reaction and protecting it from damage by free radicals (oxygen-rich molecules that can damage cells).

Other promising research suggests that gene therapy may prove important in tackling sepsis, by targeting a protein produced in the body called NF-kB, which malfunctions during sepsis. If successful, these and other treatments in development have the potential to save lives and reduce the long-term impact of the disease on survivors.

The latest research seems promising, but the greatest defenses we have again sepsis are remarkably simple. These include good infection control in hospitals, good handwashing habits, clean water, and safe childbirth. But the greatest defense is awareness, which is shockingly low across the world among medical professionals and the public alike.

Surveys suggest that only 40% of people in Australia have heard of sepsis and only one-third of this group are able to identify a single symptom. Figures are even lower in Brazil where only 14% of the public know what it is. And, although campaigning in the UK and Germany has created an awareness in over 60% of people, knowledge of the warning signs is still limited.

The greatest defenses we have again sepsis are remarkably simple

As you’d expect, awareness is higher among healthcare professionals – but there is a need for greater education within this group. A definite diagnosis is often difficult, and efforts are being made to establish clear guidance for healthcare workers across the world, including the roll-out of an internationally recognized protocol for the early identification of sepsis called Sepsis 6.

With time, scientific research may provide new treatments – but in the short term, greater awareness of the condition among the public and medical professionals is likely to have the biggest effect on saving lives and minimizing harm.

Do you think your personal experience with sepsis has impacted your professional work? In what way?

As both a sepsis survivor and an academic, what was just a topic of interest has become a real passion.  Advancing sepsis research is very important to me, as well as educating the public, health professionals, medical students and the scientists of tomorrow.

I spend a considerable amount of time talking to a range of audiences, the print media, and broadcast media in various countries to tell people about sepsis research and raise awareness of the condition.

Physically, I am still able to do the work of an academic and so I am in a fortunate position, which many people don’t share. I make good use of voice recognition software, and in the lab I also rely on a prosthetic arm, which returns a lot of my previous functionality.

When you lecture on sepsis, what is the most common question?

I would love to have both arms, but being so close to death has given me a renewed zest for life and a determination not to waste any of it.

People are always very curious about sepsis, although the questions they ask are different depending on the audience.  Scientists and health professionals tend to ask more specific questions about the condition and the research, but every group asks: “how was it for your family” and “can you still feel your arm?”

The most difficult question to answer has always been: “If you could go back in time, would you rather you hadn’t lost your arm?” Obviously, I would love to have both arms, but being so close to death has given me a renewed zest for life and a determination not to waste any of it.  My story has also potentially saved others from going through the same thing or even losing their lives. So, on balance, perhaps it has been worth it.

Acute Illness Essays Rare Diseases

A Brain Infection Destroyed My Marriage, But Made Me A Writer

For two years, I lost much of my ability to communicate. I clawed it back, but not before realizing my husband and I didn't have much to say to each other.

My husband and I were as different as night and day. In our marriage, he spoke the language of computer software and Bluetooth; once, when the principal at the high school where he taught asked all teachers to start providing him weekly lesson plans, he created a computer program to generate them automatically. Me, I balked at learning to navigate a new computer or phone, but cherished language, treating my words like pets and people: each with their own personalities and preferences, each one familiar and loved.

Fundamentally, my husband and I understood language differently. Words had specific meanings in my mind:  “Angry” was different from “livid” which was different from “strongly irritated”. For my husband, though, words were imprecise.  “Weird” was his blanket term for anything he couldn’t describe – from incompetent school secretaries to students who played out-of-tune. Other words passed through his vocabulary like fads: one day he asked me if he looked like a “curmudgeon” in his new suit. I would spend days dissecting his phrasing and sly grin before I realized he thought that was a good thing.

One day three years into our marriage, I stood up after teaching a violin lesson and my feet refused to lift from the ground. I shuffled to the door as if I were ice skating, then dialed my mother-in-law to rush me to my doctor. I would have called an ambulance if I’d thought they would know what to do with me, but how do you explain to a paramedic that you forgot how to walk? The months of biting fatigue, the clumps of hair darkening the drain, the wobbly feeling I got when I wore heels—all the clues suddenly came together to reveal a sickening conclusion.

One day three years into our marriage, I stood up after teaching a violin lesson and my feet refused to lift from the ground.

“Cerebritis,” my doctor called it. “You have inflammation in your brain.”

My sense of time, my short-term memory, my long-term memory, the sensation in my left arm, and my understanding of the world around me unraveled over the next month. But what frightened me most was losing my words.

I used to chatter about my students and crack jokes with my husband as we sat in the kitchen slipping bits of steak or corn to the dogs. Now I lay listlessly sipping coffee from a travel mug with a bendy straw stuck through the hole in the top.

“How was your day?” he’d ask when he came home from work.

“Bad,” I’d say simply.

Not painful, depressing, harrowing, or disturbing. Just bad: a word so general in its negativity that it barely conveyed any meaning at all.

Aphasia. A beautiful name for the implosion of the bridge that connected me to the rest of the world.

Aphasia. A beautiful name for the implosion of the bridge that connected me to the rest of the world.

I felt some comfort in knowing I wasn’t alone. Many survivors of brain trauma struggle for words, struggle to communicate. I watched video after video of Gabby Giffords mouthing “watch” or “spoon” for her speech therapist. I slept with a tattered copy of Jill Bolte Taylor’s My Stroke of Insight in the bed beside me, often waking up to read a sentence or two about her recovery to carry me through the night. But could either of them tell me how to get my words back?

A woman in a red sweater with chin-length brown hair posing for the camera in her living room with a blue chair in the background.

Author Meghan Beaudry today.

My mother-in-law moved into our house to take care of me in August and stayed until March. I struggled to communicate my basic needs to her from the bed in which I had become trapped. I asked her one day for “a thing that you put another thing inside and then put it in the mail.” When I needed a pillow, I requested a “head thing.” She grinned and brought me a hair brush.

As I struggled with my aphasia I wondered for myself if this inability to find the right words for thing was what my husband felt all the time. It was so still, foreign but peaceful.

“I feel like I understand you now,” I once said to him.

“Sure,” he replied.

“Do you like me like this?”

He looked at me with a tight-lipped red-eyed smile that I couldn’t read. Then he looked down at the floor.

Maybe we could survive like this, I thought, neither of us able to articulate but connected by mutual nonverbal understanding. I imagined us holding hands in silence and walking together in a park when this neurological disaster was all over.

I imagined us holding hands in silence and walking together in a park when this neurological disaster was all over.

As the months passed and my body grew weaker,  I stopped walking almost entirely. My husband came to visit me after work in the spare bedroom where I was confined to bed. He seemed to walk through the door later each night. Sometimes when I asked him to bring me water or a snack, he left the room and I didn’t see him again until the next day.

Reentering the world without my words terrified me. I resolved to write five hundred words a day to force my brain to recover what my disease had stolen from me. Sentences grew into paragraphs, paragraphs into essays and stories. All the anguish of losing my way of communicating with the world trickled out onto the page in front of me.

In the hours I spent in bed with my laptop propped up on pillows over my stomach, I waited to pounce on the few words that crept into my consciousness. When I managed to capture an interesting turn of phrase, a pun, or a complete sentence, I immortalized it in a text message to my husband.

Hair today, gone tomorrow, I captioned a picture of a clump of my hair on the floor.

A-pear-antly, I typed under a photo of a pear before I ate it.

I didn’t hear back from him.

“I want to be dunked in a vat of immunosuppressants at my next doctor’s appointment,” I joked one night as my husband stood in the doorway of my room after work.

He looked at the floor straight-faced. “You told me that one yesterday,” he said.

My loss of health and language revealed cracks in our marriage that I hadn’t seen before.

More than anything, what I was trying to tell him was that everything would be okay: that the inflammation that had swallowed my brain would one day recede like the ocean tide, and bring his wife back to him. But I didn’t have the words.

I spent the next two years clawing my way back to health. I relearned how to walk, my legs carrying me from the bedroom to the living room and eventually out the front door. My brain, stimulated by my new writing habit, began to mend the places where it had broken. I started a blog. I attended writing classes. My vocabulary expanded. Being surrounded by others who loved words as much as I do felt like coming home after a long journey.

I recovered from my illness, but my relationship with my husband never did. My words had stitched our relationship together when I was well. My loss of health and language revealed cracks in our marriage that I hadn’t seen before.

Five years after the breakdown of my brain, I still carve out time to write my daily five hundred words. Working hard to relearn what had once come naturally only deepened my love of language. The man I married is no longer part of my life, but I remind myself how lucky I am that words still are.

Creative Commons photo by Mary West.

Acute Illness Essays

Bruce Willis, A Brain Hemorrhage, and Me

After a stroke put me in the hospital, I turned to the films of Bruce Willis to teach me how to Live Free and Die Hard.

Bruce Willis and I are nothing alike. For starters, he’s bald. He’s also much older, swarthier, and probably smells like strong coffee and freshly fired AK-47’s.

One would think Bruce’s job is to smoke a lot of cigarettes in his movies. But it’s actually to kill people. Usually while he’s bleeding or pointing a gun at someone, sometimes both. Guns don’t kill people. Bruce Willis and cigarettes kill people. Also, Bruce Willis with a cigarette in his mouth. That’ll kill you twice.

There’s something to be said for Sir Bruce’s concrete level of badassery. He’s 63 years old and probably has cigars older than me. I’d like to think that in his spare time he bounces off buildings and crashes stolen vehicles into storefronts. But no matter what he’s doing with his multi-million-dollar tough guy franchise, this much we know for sure: Bruce Willis is the king of cool.

Enter me, the opposite of cool.

I am so uncool that one time I had a brain hemorrhage.

In the fall of 2014, just five days into my brand new career as a high school history teacher, things started getting strange. Symptoms like throbbing ears, double-vision, and nausea quickly landed me in an emergency room in Denver, Colorado after a rather boring blind date with a gentleman I have since named “Day of Brain Hemorrhage Guy.”

In the fall of 2014, just five days into my brand new career as a high school history teacher, things started getting strange.

I laid on a little paper-covered table as a nurse revealed that an area of my brain was currently bleeding. The words “brain” and “bleeding” rang in my ears as I gripped my mother’s hands and went into shock. I shivered in a 95-degree room and had what I can only diagnose now as a panic attack. It was easily the least cool I’ve ever been.

No more quirky lesson plans for this gal! I had a new career now: trying to make sure my head didn’t hemorrhage any more than it already had.

After being sent home from the hospital with a bleeding brain to “wait and see” if the hemorrhage would inexplicably heal itself, I was instructed to remain on bedrest for six weeks. This meant no teaching, no driving, no blind dating. The hemorrhage was too deep in my brain to operate on, the doctors said. In some cases, blood reabsorbed back into the brain over time, making operation unnecessary. Best case scenario, I could watch The Fifth Element twenty-seven times and then go back to work with a fun story for my students in a few months when I was all better.

Mimi Hayes today.

However, during those six weeks, my brain began to wreak havoc on my body, wiping out the motor functions, vision, and speech ability on my left side. The blood wasn’t reabsorbing, it was expanding. I was having a slow-motion stroke. I lost twenty pounds of muscle mass. I even lost the taste buds on the left side of my tongue. After my taste buds went, my neurologist scheduled an emergency craniotomy.

It was around this time that I started to really get Bruce Willis on the brain. True, my life didn’t exactly look like a Bruce Willis movie. Sitting on the couch being sick isn’t much like an action-packed blockbuster. But in Bruce, what I did see was a role model of who I wanted to be in this strangely powerless situation. Sure, I couldn’t match his intensity or bodycount, but his grit and take-no-shits mentality could help me get through the toughest months of my life.

I’d need intensive physical and occupational therapy to rewire my neurons after brain surgery. I’d need to be in a rehabilitation hospital surrounded by elderly people for two weeks. I started asking myself: WWBWD? What Would Bruce Willis Do in this situation?

I started asking myself: WWBWD? What Would Bruce Willis Do in this situation?

So when I got out of my wheelchair and started wobbling down the halls of the hospital using a walker against my therapist’s orders, sure, I may have been being reckless. But I’d also crossed the Willis threshold. I was breaking rules now. And boy, did it feel good.

I put a miniature Bruce on my shoulder ̶ adorably sized but still just as deadly ̶ to mentor me through the challenges of relearning how to walk, talk, and see post-injury. A job that nobody, not even Bruce himself, had prepared me for at the age of twenty-two.

With every terrifying hospital experience and frustrating therapy session he was right there with a “good job, Kiddo” or an encouraging puff of his cigar. There were versions of him too, tailored to each situation I found myself in. When I needed a hardy dose of reality it was John McClane from Die Hard; when I needed a cool-headed hero’s response it was Harry S. Stamper from Armageddon. But no matter the Bruce sitting on my shoulder, the message was the same: you are going to get through this, Kiddo.

In just two weeks in an intensive rehabilitation center, I rewired my neurons. I’d done the impossible: after my brain bleed had practically turned me into Mr. Glass, I’d become Unbreakable.

I’d done the impossible: after my brain bleed had practically turned me into Mr. Glass, I’d become Unbreakable.

I walked myself out the front doors of rehab just two weeks after my surgery, a miracle considering the shape I’d been in upon entry. My vision was correcting itself; I was able to taste foods again. I could crush a logic puzzle and make a mean batch of chocolate chip cookies in the practice therapy kitchen. Silently, Bruce Willis nodded in pride and rose a congratulatory cigar to my healing body, then helped himself to a cookie or two.

I returned to the classroom to teach in January, a mere three months after my head exploded. I put together engaging lesson plans and rocked cute teacher outfits once again. I graded papers and attended those dreaded parent-teacher conferences. I made new seating charts to separate the talkers and made copies without breaking the copy machine. Sometimes I forgot I even had a brain hemorrhage in the first place.

That’s pretty cool.

Hey, maybe Bruce and I are not so different after all.

Acute Illness Essays Rare Diseases

How Visions of Vietnam Helped Me Survive Paralysis

Changing my attitude and dreaming of another land helped me win a fight I almost lost against Guillain-Barré Syndrome.

I was just about to turn 26 when I set my sights on journeying to Vietnam.

It was probably an ambitious trip for someone who’d just been paralyzed from the neck down. But then again, I’ve always tried to seize life by the throat.

Until I was diagnosed with Guillaine-Barré Syndrome (GBS)—an autoimmune disorder in which the immune system spontaneously begins attacking the autonomic muscular syndrome, leading to paralysis and sometimes death–I’d always felt a youthful sense of indestructibility. Becoming dangerously ill was something that only happened to other people, older people, less fit people, but not to me. I naïvely thought my body couldn’t break or fail.

I naïvely thought my body couldn’t break or fail. Then it did, and I found myself struggling for answers.

Then it did, and I found myself struggling for answers. As a young reporter, I worked I was working fairly stressful nine-hour days during the week but ate well, regularly went to spin class, hiked at weekends and never smoked. I sometimes enjoyed some wine with my boyfriend, but there was nothing particularly hazardous about my lifestyle. So why me? Why now? 

Sarah Harvey was 25 when she was diagnosed with Guillain-Barré.

I’m usually pretty calm, even in a manic newsroom, but I found it hard to rein in my anger at being struck down in the prime of life by a mysterious autoimmune neuropathy. And it frustrated me that nobody could explain the cause. “There isn’t enough research yet to tell us why people get GBS,” my neurologist explained. There was nobody for me to direct my frustration against.

The trigger for my GBS was nothing more than a respiratory infection. For some reason my immune system malfunctioned and started attacking the nervous system, causing the nerves to become inflamed. The nerve pain felt like every cell in my body was on fire, and the morphine I was prescribed barely took the edge off. I developed hypersensitivity to the mildest touch, making even getting my blood pressure taken feel like my arm was being crushed by a vice.  My body had become a prison, I could only move my neck and eyelids. I had terrifying nightmares every night.

The trip’s inception probably sprung from my understandable desire to fly away from my reality. Away from the beep of the heart monitor; from the hiss of the ventilator; from the cold white gunk I was fed through my nose-tube and from the purple bruises on my lower belly caused by my daily injections of anti-coagulant. Here, at my weakest point, I began planning my ‘great escape’ to Vietnam. And I think it might have saved my life.

Here, at my weakest point, I began planning my ‘great escape’ to Vietnam.

The day GBS almost killed me, I’d already been hospitalized for three nights. The diesease had progressed to an acute stage where paralysis was choking my diaphragm. I had to have a tracheotomy, but I was told that, even with the surgery, I still had a 20% chance of dying. And even if I survived, I’d probably spend a year in the hospital.

Seeing my boyfriend and parents so upset over my prospects had crushed my spirits. My vitals got weaker, and as they did, the nurses got quieter. Since the tracheotomy prevented me from speaking, they asked me to nod if I were religious and would like to see a priest. Was I dying? I wondered. But how could I, at 25? There was so much more I wanted, needed to achieve. I couldn’t just fade away. I wasn’t going to let myself.

Spoiler: despite almost dying of Guillain-Barré, Sara’s dream came true. She made it to Vietnam, despite lingering nerve pain and facial paralysis.

In the face of plummeting vitals, it wasn’t easy to switch my thoughts from depression to something optimistic, but I tried. GBS was horrifying, but it was something I could recover from, at least in theory. That made me lucky, I told myself, remembering the cancer survivors I had read about who stressed the importance of a positive mental attitude towards recovery. My luck would hold, I assured myself: I was going to get out of this hospital, and I was going to live.

GBS was horrifying, but it was something I could recover from, at least in theory. That made me lucky, I told myself… I was going to live.

So I pictured how it would feel to paddle down the Mekong Delta, to stroll along a leafy boulevard in Hanoi, to sail through Halong Bay on a wooden junk boat with a red sail, and to taste hot pho at a roadside stall.

Hours later, my vital signs started improving. My condition went from critical to serious, and then stabilized. I heard nurses and even neurologists utter the term “miracle”. “God is definitely looking out for you,” my nurse, Saffi, said, as she stroked my hand. I nodded in agreement; the only movement I could make.

My luck continued to hold, perhaps as a testament to the power of positive visualization. After I stabilized I stopped improving, but after being given two doses of intravenous immunoglobulin (which is thought to speed up recovery), I was finally was able to twitch my toes (something I still do today to remind myself how lucky I am).

I then volunteered to take part in a pioneering experiment on using a voice box with a tracheotomy in Intensive Care. Until that point, I’d communicate with nurses using an alphabet board (they’d tap each letter and I’d nod spell out what I wanted). The voice box was a huge blessing for communication. Sometimes on the hospital radio, I’d hear a song I loved and cry that I couldn’t dance. But now, at least, I could sing along, however badly.

“In total, I was in hospital for three months; three months after that, and six months after I was first diagnosed, my boyfriend and I flew to Hanoi.”

From then on, my physical therapy was intense. After the paralysis eased, I worked on strengthening the muscles that had wasted away while I was in bed. As my arms grew stronger, I learned how to pull myself into a wheelchair, and from there, I threw myself aggressively into my recovery, pushing through the residual pain from damaged nerves and wasted muscles. I progressed to a walking frame and was told I’d probably fall over but I was vigilant and refused to let that happen.

In total, I was in hospital for three months; three months after that, and six months after I was first diagnosed, my boyfriend and I flew to Hanoi. My luck still held: while my legs were stiff and I still dealt with minor nerve pain, I’d somehow escaped the chronic fatigue, nerve pain and numbness that plagues so many GBS survivors. Together, my boyfriend and I paddled canoes on the Mekong Delta, sailed on the emerald waters of Halong Bay, and tried all kinds of Vietnamese delicacies. It was the purest and most precious sense of freedom after being locked inside my own body. A freedom I’ll hold onto forever.

Acute Illness Essays Rare Diseases

How My Own Experience With Illness Helped Me Help My Grandma Die

My own battle with Guillain-Barré, a rare autoimmune disorder, gave me the experience and authority to be there for my grandmother at the end of her life.

When I was two months shy of my nineteenth birthday, I was diagnosed with a rare affliction that affects one in 100,000 people. While most college students are dealing with heartbreak, I was dealing with Guillain-Barré Syndrome, a rare autoimmune disorder that left me unable to walk, and dealing with excruciating pain. I tried countless medications to impede the disease’s progress. I combatted doctors who didn’t believe me. I took every painkiller you could name. I spent years in recovery. It was hell.

There are many reasons I wish I hadn’t come down with Guillain-Barré. That disease was a real drag. I am also grateful for it because it allowed me to be there for my grandmother, whom I adored, in a profound way at the end of her life.

Eight years after my diagnosis, in the fall of 2015, I was more or less back to normal. This was the fall that my grandmother, Gram, came to live with my parents. We had no way of knowing that it would be the last year of her life.

I am also grateful for [Guillain-Barré] because it allowed me to be there for my grandmother, whom I adored, in a profound way at the end of her life.

Gram was a hoot. She was a good time wherever she went. She also had a hard time hearing bad news— bad news is decidedly not fun. As new developments emerged in the twisted web of her health, it was difficult to get her to listen. She resisted medications, doctors, and hospital stays.

Last spring, Gram was diagnosed with a Stage Four bed sore. It was infected and went all the way to the bone— a real bad news bears situation. She needed an operation, which she got. Then she needed rehab, which she reviled. It was not fun.

When Gram resisted, which she always did, my mother would often tag me in. was given the task of getting Gram to come to her senses. I was the sugar coating to cover a bitter pill. I could do what no one else could. I could say that I’d been there.

She wanted to go home. Wasn’t it ridiculous that they wanted her to stay here?

I explained to her that during my hospitalizations, I had pushed too hard. I made it my sole mission to get home. When I arrived home, I realized that I should have stayed. As annoying as the hospital is, sometimes it is hard to lie in bed at home.

Gram relented. She even listened. She didn’t particularly care for my message, but she deferred to my authority.

The author, Mary Kate Miller, and her grandmother.

 

I was the sugar coating to cover a bitter pill. I could do what no one else could. I could say that I’d been there.

She talked smack about medications. All of the doctors were “idiots” (her word). It helped that I’d been around the block with many of the medications and could hold my own against her complaints. Gabapentin? Yup. That makes you drowsy. Zofran (an anti-nausea medication) not working? That doesn’t mean it’s a bad medication; it’s a sign of how extreme your nausea is. Weed brownies? Worth trying. When you’re dealing with pain that no dose of narcotics can break, everything is worth a try.

In my illness, I wanted desperately to have someone who understood, who really knew what it was like. So did Gram. I was constantly lonely and frustrating. So was Gram. In this case, I could ease some of that pain, but not her physical pain.

Instead of recovering from the bed sore, Gram got worse. She grew weaker, and it became difficult for her to go to the bathroom on her own. She resisted help. She didn’t want the nurses to come with her. She wouldn’t entertain the idea of a bed pan.

I looked at her and said, “I get it. It’s embarrassing, and it sucks. I’ve done it both ways. I’ve accepted help, and I’ve insisted on going to the bathroom by myself… and then when I got back in bed, I felt terrible. Why feel terrible?” She looked at me, skeptical, but she didn’t argue.

My grandmother and I had a very special relationship. We were soul mates, kindred spirits. I cheered her up. That’s what everyone said. On the day that we made the decision to move her to hospice, she looked like a corpse when I entered the room, before she noticed I was there. It is shocking to see someone you love as they straddle the line between the world of the living and whatever that other side is. Once she saw me, she perked right up. My aunts and uncle said it was the liveliest they’d seen her all day.

I was happy that I could be that person for Gram, but it was also deeply confusing to me. I was told that she was dying, and then I show up to find a woman who wants to chat about everything and anything. It made it harder as we approached the end.

I was told that she was dying, and then I show up to find a woman who wants to chat about everything and anything. It made it harder as we approached the end.

On her first day of hospice, she experienced what turned out to be her last burst of energy. She was chatting with my Aunt Sue, giggling. I was angry. All I could think was, you came home too soon. Noticing my reticence, she turned to me with a rare angry look.

“And you,” she said. “I’d like to buy something nice for you and your home.

“I need a cutting board,” I answered.

So began an epic search for an olive wood cutting board. It came in the mail the week after she died.

When you have a long-term illness, it can affect your relationship with death. Sometimes, it’s better to die than to experience excruciating, ongoing pain. In hospice, if you touched Gram, tried to move an arm or a leg, she screamed out in agony. I sat by her bed every day. I took the morphine nightshift, administering her medication every hour on the hour from 10pm to 4am.

I was the first person to let go. I took one night off from hospice care. I had an improv show in the city, and Gram would have wanted me to go. Before I left, I decided to say goodbye. I told her that I’d borrowed one of her signature button-downs and matching sneakers, so that I could bring her on stage with me. If she’d been awake, she would have gotten a kick out of it. I brushed her hair, told her that I loved her. “If this is the last time I see you, I want you to know that I love you very much,” I finished.

“We’re all going downstairs. Do whatever you need to do. I’ll see you if I see you.”

After that, I made a point to say goodbye every time I left her side. She was a stubborn broad, and I knew it would be hard for her to let go. I said it after I finished my medication shift, when I did a coffee run, and lastly, when the hospice nurse came for a visit and asked to talk to the family downstairs.

As we all stood, I said to Gram, “We’re all going downstairs. Do whatever you need to do. I’ll see you if I see you.”

The hospice nurse told us that her body had started to shut down. She would die in the next 72 hours. She passed within minutes.

My Aunt Jackie held her as she died. Even though I wasn’t in the room, I like to think that I was with her too, reminding her that it was okay to die.  I was happy that I was able to be there for her in a way that others could not. Because she was right. I did know what it felt like.

At nineteen, I began a life-threatening journey filled with pain. I hated every second of it, even the memories once I was better. Until it became the thing that allowed me to walk hand in hand with Gram until we said goodbye.

Creative Commons photo by _LisaMarie_.

Acute Illness Features Rare Diseases

Doctors Who Craft

Across the country, off-the-clock medical professionals are turning to knitting, baking, painting, lettering, and other crafts not just for fun, but to doctor their souls.

At 35 weeks pregnant, Priscilla Sarmiento Gupana rushed to her local hospital with swollen legs and stomach pain. Severe preeclampsia, said her doctor, who ordered an emergency C-section. Twenty-four minutes after she delivered her baby, Maxwell James, her doctor pronounced him dead.

Pediatrician Priscilla Sarmiento Gupana turned to baking after the tragic death of her newborn son as a method of coping.

Sarmiento Gupana, a pediatrician, was shocked to learn Maxwell had a rare and fatal genetic blood disorder, Hemoglobin Bart’s disease. In the weeks and months following his death, she found comfort in handmade gifts she received from medical school friends. Years earlier in med school in New Jersey, the friends often met up for crafting nights as a way to decompress from their studies. A knit prayer shawl, a necklace with angel wings engraved with her baby’s name lifted Sarmiento Gupana up as she grieved.

“When people make things with their hands, it’s more than the object you get,” she said. “It’s the process and love and time that go into it.”

A baker since age 7, and an avid knitter, Sarmiento Gupana found that creating her own art also helped her heal. Now, nearly seven years and two healthy children later, she still finds solace in creating. Sarmiento Gupana makes intricately decorated cookies, many with a medical theme–an anatomically correct spine, a brain, a kidney–for fellow physicians, family and friends of friends. Her cookies rival those made by professional bakers. It’s a pastime she uses to manage the secondary trauma she faces as a pediatrician working in an underserved community in Aurora, Ill. And she’s not alone.

Across the country, women working high-profile, high-stress jobs in medicine are finding a haven and creative outlet in professional-quality crafting…

Across the country, women working high-profile, high-stress jobs in medicine are finding a haven and creative outlet in professional-quality crafting, making items like specialty soaps, cupcake bouquets, and mosaics out of test tube tops. Thousands have banded together in a Facebook group, Physician Mom Crafters. Many say crafting has also helped their medical practice.

Crafting is my therapy,” said Nora Hanna, a child psychiatrist in private practice.It’s something to look forward to. It gets me through a long day.”

Some of Gupana’s medically-inspired cookie designs.

Hanna’s chosen art form: hand-lettering, a modern style of calligraphy she uses to create handmade cards. But she also dabbles in jewelry making. In her home outside Atlanta, Hanna stockpiles pens, pencils, paper, and stamps. In her previous job at an extended day program for foster children with mental health issues, she used crafting to connect with kids. She helped program participants make jewelry to give as gifts and scrapbooks that told their life story.

“I encourage kids, and especially those who are anxious or pick at themselves, to learn how to knit, crochet, or do origami, to channel that nervous energy into something else,” she said.

For Sharron Mason, an MD who practices addiction medicine in Hot Springs, Arkansas, her “Crayola art” gives her an entry point with patients. She creates colorful, soothing works of art using crayons she melts on canvas and then manipulates with a hairdryer. One work in teal and green reminiscent of the ocean hangs in her office.

Sharron Mason hard at work on some of her ‘Crayola Art’

Mason, a single mom who worked multiple jobs before enrolling in med school in her forties, had to get creative during the holidays when her kids were young and money was tight. The family’s Christmas ornaments were DIY. “For $2, some spray paint, pecan shells, twigs, and ribbon, you can have a beautiful tree,” she said.

Years later, what began as a project to create a painting to hang in her living room morphed into a side gig and passion project. She’s taken over the guest room in her home as an art room and sells pieces to local businesses, friends, and acquaintances. She also donates works to the Christian music industry.

“I have to craft because working as a doctor is very stressful,” Mason said. “You’re taking on a responsibility for peoples’ lives. Sometimes those lives are very hard and sad and you take it home with you. When I get home, I put on my Christian music, I turn it up loud, and I start crafting.”

“Crafting is my therapy.. It’s something to look forward to. It gets me through a long day.”

Sue Summerton, a radiologist in Philly, makes works of art from recreations of X-rays that look like letters of the alphabet. She makes X-ray posters and signs for doctor’s offices, including her own, for friends and for people around the world who find her online. The U in her artwork is her own colon. She uses a recreated image of an eyeball for an O; a series of gallstones in a row make the letter J.

Radiologist Sue Summerton crafts X-Ray inspired art to help relieve stress.

I really enjoy the process of creating,” Summerton said. “People come into my office afraid to see what I’ve found on their mammogram. This takes away a little bit of that fear and anxiety. Creating something that can be a positive part of people’s lives is a gift for me.”

When tragedy or illness strikes the women’s online crafting community, they join forces to support each other, making a care package of handmade items to send the member in need. Sarmiento Gupana once baked up a batch of breast-themed cookies for a fellow group member’s “Bye Bye Boobies” party ahead of her mastectomy. She’s also made cookies for grieving parents of children who’ve passed away.

But plenty of her projects are just plain fun. Recently she made nurse hat cake pops for her nursing staff, whimsical ball-of-yarn cookies for a yarn store owner, and scaly mermaid tail cookies for a friend’s teenage daughter’s birthday. Next on her list: pancreas and gastrointestinal tract cookies.

“They’re silly sugar cookies, but they’re so much more than that,” Sarmiento Gupana said. “Crafting has been an outlet for me. It’s a cool intersection between my work life and my creative life and a way for me to stay focused. Baking is a physical representation of love and care and effort. And really, body part and anatomy cookies are just cool.”

 

 

Acute Illness Q&As

When Morning Sickness Is Deadly

Geneticist Marlena Fejzo lost a pregnancy from hyperemesis gravidarum, or extreme morning sickness. Now she's trying to prove the condition is genetic, and not just in women's minds.

About seventy percent of women suffer some form of nausea or vomiting in pregnancy. Morning sickness, a common term for the ailment, affects mothers differently. Generally, it is seen as an expected hurdle of child rearing. Yet, for two percent of women, the symptoms are exaggerated to a nightmarish degree, making daily tasks unbearable and threatening long-term health of the mother and even the life of the unborn. From a medical perspective, the condition, called hyperemesis gravidarum, has been a mystery: no one has been able to nail down a cause or treatment. Rather, the common consensus on the origins of hyperemesis has long been that it is psychological. That is to say, doctors have traditionally assumed that the symptoms are imaginary, something like physical manifestations of a woman’s anxieties over motherhood.

Merlena Fejzo wants to make sure that women’s severe morning sickness is taken seriously.

That is what Marlena Fejzo, a geneticist at the University of California, Los Angeles, was told when she suffered through hyperemesis in the late nineties. It was her second pregnancy and, though she had had hyperemesis in the first one, it had gone undiagnosed. The second time around doctors identified it as such but the experience was worse. Fejzo was bedridden for months at her home in Los Angeles, unable to keep down food or water. Eventually, her weight dropped to ninety pounds. She had to be fed with an IV. By the end of it, Fejzo could not even speak. The whole time, her doctor believed it to be some kind of ploy for attention from her family, who had to care for her. This, she says, is a common view of the medical community towards hyperemesis.

After she lost the child, Fejzo, knowing that there was nothing imaginary about what she had gone through, decided that she would figure out the cause. She would prove hyperemesis was real. As a geneticist, she looked for it in the genes, combing tirelessly through genetic data from hyperemesis sufferers, largely on her own time, looking for clues.

In March, Fejzo’s years-long research was compiled in a paper published in Nature Communications, a prestigious peer-reviewed scientific journal. The paper, which identified two genes thought to be the cause of hyperemesis, relied on medical data from over 51,000 mothers with hyperemesis. Some of the data was gathered by Fejzo but the vast majority came from 23andMe, a private genomics company. It is the first such study to identify an actual cause of the condition. It not only vindicates the experiences of doubted mothers like Fejzo, but lays the groundwork for a potential cure. We reached out to Fejzo to hear more.

When does hyperemesis typically begin in pregnancy?

It can start anywhere from right when the pregnancy begins all the way to anytime in the first trimester. Generally, the peak is around twelve weeks. Usually, it starts at about six weeks. Not everyone has it all the way to term. For some, it goes away in the second trimester. For others, it lasts the entire pregnancy.

What percentage of women with hyperemesis suffer miscarriages?

In our cohort from the study, we have over one hundred women who have done a therapeutic termination because of it. We found that it is about one in three, including the terminations. Then there’s an increased risk of preterm birth. There’s also an increased risk of neurodevelopmental delay in children and vitamin deficiency, which can lead to infant death.

What is its medical history?

It was always believed that it was somehow caused by HCG, the hormone that is tested for in pregnancy tests. That was the leading scientific theory. Unfortunately, there has also been this misogynistic theory that it was all in a woman’s head, like a woman not wanting her pregnancy or wanting to be pregnant. The first thing that this study is going to do is help to prove that that is not the case. Women with hyperemesis gravidarum are often treated unfairly by their doctors. Doctors are still teaching this in medical schools, that it’s a psychological problem. Recently I got an email from a med school student with a video of her female professor, an OBGYN, teaching that, when women are hospitalized for hyperemesis, there usually is something going on at home or that they just do not want to get better, things like that.

Unfortunately, there has also been this misogynistic theory [about severe morning sickness] that it was all in a woman’s head, like a woman not wanting her pregnancy or wanting to be pregnant.

Is there much pushback on such claims?

It’s a pretty widespread belief. I hear about it all the time. When I had hyperemesis, my own doctor told me that I just wanted attention from my family. I was bedridden and could not use the bathroom. I needed my family to come and change my bedpans. He thought that I really wanted that to happen, that I wanted the attention. It’s really crazy and terrible. But it is that way because doctors didn’t know what caused it. And now this is the first study to show what does. As others repeat this, it will become accepted. But it’s going to take some time I think.

How would you describe what you found?

We found two genes to be linked to hyperemesis: GDF15 and IGFBP7. Those two genes code for two proteins with the same name. What we did was look at those protein levels and see if they’re abnormally high in women with hyperemesis. We compared the levels of the proteins in blood from women with hyperemesis to women with normal or no nausea or vomiting in pregnancy. They were all at twelve weeks gestational age. The levels of GDF15 and IGFBP7 were significantly higher in the hyperemesis women. Then at 24 weeks, once their hyperemesis had resolved somewhat, they were no longer significantly different. So it seems to be that these are the causal proteins.

Using genetics is a non-biased approach in the sense that we’re looking at every gene, the hormones and receptors, different immune factors, anything that’s coded for by our genome that can be screened using a genome-wide association study. This, I thought, would point to the genetic risk factors for it. It turned out to be these two genes are both expressed in the placenta and are already known to cause cachexia, a disease that kills twenty percent of cancer patients. It’s basically muscle wasting and weight loss and loss of appetite. It’s caused by these same proteins. Everything is really pointing to abnormally high levels of this being a major cause of hyperemesis.

Can you talk a bit about your own experience with hyperemesis?

It was pretty bad in my second pregnancy. I was so ill I couldn’t eat or drink anything. I was really weak. I couldn’t move without vomiting. After I got diagnosed with hyperemesis, I just had to lie really still, like a form of torture. I just laid there staring at the wall. I didn’t eat or drink anything for over ten weeks. I was given IV fluids. They tried seven different drugs on me but nothing worked. I was not able to keep anything down. Eventually they put me on a feeding tube but it was really too late and the baby died, at fifteen weeks.

In the last few weeks before I lost the baby I couldn’t even speak. I had to use a buzzer. I was really unable to take care of anything. I was frozen in my body. For some reason there’s this ridiculous theory that women just have some problem that, even when it’s a planned pregnancy, they still say, ‘Well it’s a subconscious rejection.’ It’s because there just hasn’t been research done. There were no answers.

For some reason there’s this ridiculous theory that women just have some problem that, even when it’s a planned pregnancy, they still say, ‘Well it’s a subconscious rejection.’ It’s because there just hasn’t been research done.

How did that experience impact your research and career?

After I lost the baby then I started researching it. There was very little known. I’m a geneticist by training so I wanted to see if it was genetic. I didn’t have it in my family but that doesn’t mean that it’s not genetic. I created these really long surveys about it, asking any question I could think of that might help to shed light on it: did any of your female relatives have it; do you have autoimmune disease in your family or other related syndromes; difficulties with your periods or early menopause–anything. I put it online and then a nurse from Oregon who had it answered my survey. She wrote me that she was going to start a webpage on it. She started a foundation and I partnered with her. She put the survey on her website, which also had informational support for women. A lot of women came to that and that’s how I was able to recruit for my study. We found that there was familial aggregation. So if you’re sister has it, you have a seventeen-fold increased risk of having it yourself.

Did your recent findings make you feel vindicated?

Definitely. And I’ve gotten lots of emails from others feeling that. Especially the women who terminated. They felt this tremendous guilt. This study really helps them to know it’s a real thing and there was a reason they terminated. The link to cachexia is kind of telling because when people say they feel like they’re dying from cachexia everyone believes them and the levels of this GDF15 protein are actually quite a bit lower than in the hyperemesis patients. When these women say they feel like they’re dying and need to terminate their pregnancies, they really feel like they’re dying.

Is there a potential treatment coming?  
Well, because of the cachexia connection it’s really great. Novartis is developing an antibody drug that will be used to bind GDF15 and hopefully block it. It’s worked already in animal models to restore weight. There’s no reason that should not work for pregnancy as well. The big question is if it will be safe to use in pregnancy. We’ll see.

Acute Illness Chronic Illness Health & Fitness

Logan Lucky

Exercise guru Drew Logan was in perfect health... until three sudden cardiac arrests nearly killed him. Now, with the help of his service dog Lucky, he's coming at life from a new angle.

Drew Logan, 44, doesn’t remember the six minutes he was considered technically dead. He only knows the frightening stories he’s been told by the paramedics who resuscitated him en route to the hospital.

A celebrity personal trainer, who coached stars including Keith Urban and members of the country band, Florida Georgia Line, Logan also starred as a celebrity trainer and cast member on the NBC reality television show, Strong.

At the age of 30, Logan was the picture of health before he suffered three consecutive sudden cardiac arrests (SCAs) in October 2004. Unlike a heart attack that occurs when a blocked artery prevents oxygen-rich blood from reaching a section of the heart, SCAs are electrical rhythm malfunctions of the heart that cause it to stop completely.

Logan experienced his first two SCAs while at his then-girlfriend’s home in Nashville. He remembers feeling fine one moment, followed by a sharp pain in his head and his vision going dark. Although he regained consciousness about 30 seconds later, Logan still felt off balance. After briefly standing, he once again lost consciousness.

When paramedics found Logan, he was lying on the floor, his face was blue, and he hadn’t been breathing for six minutes. They restarted his heart and transported him to nearby Vanderbilt Hospital where he suffered a third SCA. He was defibrillated over 10 times before slipping into a coma.

Since only 10 percent of people survive SCAs, doctors weren’t optimistic about Logan’s chances of survival. Three days later, when Logan emerged from the coma, he found his doctors were mystified as to why a 30-year-old man who was the picture of health, with only 5 percent body fat, would experience three sudden cardiac arrests.

Doctors were mystified  why a 30-year-old man who was the picture of health, with only 5 percent body fat, would experience three sudden cardiac arrests.

“Doctors at the hospital performed numerous medical tests to try and determine why I had three SCAs,” Logan says. “They didn’t find any signs of coronary artery disease, an abnormality in my heart rhythm, or any other factors that could have caused an SCA. They finally presumed it was stress-related, since I had been working on a big business deal that ultimately fell through.”

Although baffled as to what may have caused Logan’s SCAs, doctors decided to try to prevent future attacks by implanting a defibrillator just under the skin on the left side of his chest. The device would shock his heart and keep him alive in the event that he had another SCA.

Doctors called Logan “a medical miracle”: someone who had experienced three SCAs in one night, and who not only survived the cardiac arrests, but also did so without sustaining any brain or heart damage.

“Doctors said I was in the five percent of patients who suffer an SCA without any signs of coronary artery disease or a heart abnormality,” Logan says. “They said the fact that I was in great shape was probably what saved my life.”

Drew Logan and his service dog, Lucky.

A Best Friend at His Side

Shortly after being discharged from the hospital, Logan saw a study on how dogs were being trained as cardiac alert service animals, and how they could detect sudden increases in their owner’s rising cortisol or blood pressure levels, alerting their owners to immediately sit down.

“I’ve always had dogs and I thought a cardiac alert dog would offer an extra sense of security,” Logan says. “If my defibrillator goes off, it feels as though I’ve been kicked by a racehorse, and if I’m in a crowded gym or an airport when that happens, I could accidentally hurt myself or others.”

Logan found Lucky, a black Plott hound, in 2006, at a high-kill Nashville animal shelter when the dog was eight weeks old. One look at the pup’s soulful brown eyes, and Logan knew he had found not only a service dog, but a new best friend.

If my defibrillator goes off, it feels as though I’ve been kicked by a racehorse.

Logan adopted Lucky and when he was a year old had him undergo training to be a cardiac service dog. Lucky quickly caught on how to use his keen sense of smell to detect changes in rising cortisol levels, which indicate stress, and to alert Logan that he needed to sit down and relax for a few minutes.

Today, Lucky remains by Logan’s side at all times even traveling with him extensively. When they’re not on the road, they often join Logan’s other two dogs for walks on the beach near their Manhattan Beach, California home.

Approaching Fitness (and Life) Differently

When Logan returned to his work as a personal trainer in January 2005, he learned he hadn’t escaped his health crisis completely unscathed. Whereas before he had no problem designing and remembering complex diet and fitness programs for his clients, he found the SCAs had left him with short-term memory problems.

“I knew I needed to come up with a diet and fitness plan that was easy, not just for my clients, but also for me,” Logan says.

He started by giving his clients a list of daily goals to meet, and asking them to score themselves out of 100 on how well they followed his instructions for eating regular meals, snacks and completing workouts. His clients reported great success, and Logan later learned that his new plan wasn’t as simple as he thought.

“I discovered the process is called neurological patterning and that it’s possible to rewrite unhealthy habits and create healthier ones with diet, exercise and a reward system,” Logan says.

He named his plan, “25 Days” based on the concept that it takes 25 days to neurologically build positive habits. Last September, he published his book, 25 Days: A Proven Program to Rewire Your Brain, Stop Weight Gain, and Finally Crush the Habits You Hate Forever. (Gallery Books, September 2017).

Today, Logan is developing a meal delivery plan based on his 25 Days plan, and is also working on another television project. Yet no matter how busy he is, he says the events of October 2004 served as a wake-up call.

“I’m acutely aware of the limited time we have we have to live our lives,” Logan says. “And as a result, I don’t tolerate nonsense anymore and I feel lucky to be alive.”