When morning sickness kills

When nausea and vomiting kicked in the sixth week of pregnancy, Amy Ayers and her husband Tom were elated. After an early miscarriage a few months prior, morning sickness seemed like a sign things were going to be okay.

“I dreamt about being a mom my whole life, and here it was finally happening for me,” Amy tells Inverse.

They started a cache of infant hand-me-downs in a corner of their room and began mulling baby names.

“We had the same feelings that most soon-to-be-first time parents who are hoping for children feel,” Tom adds. “Excitement and joy, apprehension and doubt, all at the same time.”

But when Amy’s symptoms quickly deteriorated into something far more serious, the party ended.

Amy vomited up to 20 times a day. Eating and drinking became herculean tasks. She started carrying a puke bucket whenever she left her bedroom. Her muscles ached to the point even basic chores — changing clothes, taking a shower — left her exhausted in bed for hours afterward.

“To be honest, I just chalked it up to morning sickness,” Tom remembers, “At the beginning, I rarely saw her vomit, so I was unaware of how sick she actually was feeling. I remember, however, her insisting to me that the degree of nausea that she was experiencing was not normal.”

Amy was not suffering from morning sickness, but hyperemesis gravidarum, a rare disorder that affects approximately 1 percent of pregnancies and is characterized by severe and persistent nausea and vomiting that can require hospitalization. Historically it was dismissed by medical practitioners as psychosomatic rather than a genuine physiological problem, and many women still find this is the case.

Hyperemesis gravidarum frequently gets dismissed by healthcare providers as morning sickness, though it hospitalizes 375,000 American women a year. Typical symptoms include severe dehydration, vitamin and mineral deficiencies, and losing over five percent of one’s body weight, but more severe cases include fractured ribs, detached retinas, burst eardrums, torn esophagi, hallucinations, and in rare cases, brain damage.

The road to diagnosis

Partners and loved ones of women with hyperemesis gravidarum will often be their most important supporters, from advocating for her with medical practitioners to monitoring her symptoms and determining when she needs to be hospitalized. As a result, partners often suffer too, just in a very different way. They may bear more responsibilities — sole financial earner, childcarer, housekeeping — all while bearing the distressing responsibility of being the sole lifeline for their ailing partner.

Two months in, Amy quit her job as a nanny and eventually ended up bed-bound. Tom, who teaches at a Catholic high school, managed the housekeeping, laundry, grocery shopping, and cleaning Amy’s bucket when he came home from work each night. He also started donating plasma to make ends meet.

“I just chalked it up to morning sickness.”

“Her symptoms continued to get worse as time went on,” Tom recalls, “I would observe her vomiting repeatedly, all day and often at night as well. Because of the physical drain that this took on my wife, I found myself stretched very thin between work and the normal household upkeep tasks.”

For part of the pregnancy, Tom was teaching remotely from home due to Covid-19 precautions, something that gave him more flexibility to help Amy, but he eventually faced his own challenges as well.

“I felt extremely stretched. Remote working drove me into a bit of a depression. I felt very isolated from my colleagues. However, when I went back to work, I felt that I was barely hanging on,” he says.

“I would generally wake up at night when Amy would get sick, or I would spend a sleepless night on the couch. From there, I would teach all day, come home, do as much of the housework as I could, run out and do shopping, and take care of the dog, all while trying my best to be mentally present for Amy.”

Amy hoped for relief from her obstetrician visits but each time, she says, “they would reassure me I was fine and was just struggling with morning sickness.”

“It was extremely frustrating,” says Tom. “The hardest part was seeing how in distress my wife was and being powerless to do anything about it, just seeing the desperation in her eyes was heartbreaking.”

When Amy hit the point of not keeping any food or liquid down for three-day stretches during her second month, she took herself to the ER where she was finally given a hyperemesis gravidarum diagnosis.

“It felt validating to know I wasn’t crazy and something was actually wrong,” says Amy.

The condition is serious. Before 1950, hyperemesis gravidarum was one of the leading causes of maternal death. The implications go beyond the pregnancy, too: Some studies suggest a higher fetal loss rate and increased chances of developing ADHD and autism in kids exposed to hyperemesis gravidarum in utero.

Some treatments have been shown to alleviate the severity of the symptoms — intravenous fluids, antihistamines, anti-nausea medication — however, a 2008 study found women with hyperemesis gravidarum are not only disregarded by medical practitioners but are routinely denied medication or told it’s “all in their head” by their obstetrician.

Marlena Fezjo, a faculty researcher in the Department of Obstetrics and Gynecology at the University of Southern California who suffered hyperemesis gravidarum with three pregnancies and miscarried her first baby, blames a lack of scientific understanding for frequent misdiagnosis.

“[Hyperemesis gravidarum] continues to be dismissed as psychological, which can lead to poor patient-provider relationships and undertreatment. The problem stems from not knowing the real cause of the condition,” Fezjo tells Inverse.

A troubled history

For an illness with a long history — one of the earliest references to hyperemesis gravidarum symptoms dates back to Soranus’ 100 AD work Gynecology — research on hyperemesis gravidarum has been painfully limited.

Throughout the 19th and early 20th centuries, doctors attributed the maternal illness to uterine lesions or progesterone imbalance and treated it with bleeding, thalidomide, isolation, force-feeding, or injections with a woman’s spouse’s blood. Other doctors believed the cause was hysteria while some women were presumed to have a schizoid personality disorder and were treated with psychotherapy or isolation.

While young medical students may learn more accurate information in medical school, the impact of the historical hysteria diagnosis still haunts the halls of practitioners.

“It felt validating to know I wasn’t crazy.”

“The stigma of the ‘hysterical’ pregnant woman persists and perpetuates this misogynistic theory,” says Fezjo.

“When people don’t understand the cause of something, it's a fairly standard assumption to simply not believe it. Just because a psychological component to [hyperemesis gravidarum] has been repeated in the medical literature over and over since Freudian theories to the etiology were introduced, does not make it a fact.”

And while medication can now help manage symptoms to avoid hospitalization, there is still no cure for hyperemesis gravidarum. The clinical symptoms of hyperemesis gravidarum, however miserable, are often eclipsed by the psychosocial burdens women and their partners bear.

Over 80 percent of women with hyperemesis gravidarum suffer negative psychosocial burdens, a 2008 study revealed. These included financial issues from job loss or the added medical costs and childcare; depression, anxiety, and suicidal ideation.

These flow-on effects affected partners as well, as shown in a 2016 analysis of post-pregnancy issues for hyperemesis gravidarum women: nearly one-third of the women reported that they had marital problems; 41 percent faced “husband strain,” such as their spouse losing a job; and 3 percent of hyperemesis gravidarum pregnancies ended in divorce or separation.

“Friends of ours would often ask about her, and I found it exhausting after a while to admit that actually, things were still terrible,” Tom says.

“It’s one thing to keep one’s friends updated about a normal illness that might last a few days or a week if it’s bad; HG, however, seemed endless. It was exhausting. The exhaustion was often emotionally numbing.”

Seeking: A support system

Amy’s hyperemesis gravidarum symptoms lasted the entire duration of her pregnancy. Because there’s no miracle cure after being diagnosed and just a list of things it will take to survive — adequate hydration, electrolytes, and nutrition — the psychosocial burdens on pregnant women and their partners don’t necessarily let up when a diagnosis is received.

When Tom was reaching his breaking point, he and Amy reached out to friends and co-workers to set up a meal train and drive Amy to her doctor’s appointments. They also hired a driver through Medicaid to chauffeur Amy back and forth from the hospital.

“When you go through something like this during pregnancy, it becomes so much more about just surviving than about thriving.”

By doing this, Tom was better able to support Amy and together they grew more and more assertive with Amy’s obstetrician, who eventually scheduled Amy in for three, three-hour infusions at the hospital each week and a cocktail of medications to manage her symptoms.

Support from a partner or loved one is often critical to the health of those suffering from hyperemesis gravidarum. Amy, Tom, and Fezjo advise partners to empathize with and advocate for the pregnant person, create a team of support, and make time to care for themselves:

4. Empathize and be compassionate

“Constant empathy is the most important thing. No matter how old the vomiting gets, it’s like the first time for her throwing up, so never be dismissive, even if she’s been puking all day,” says Tom.

“In any way you are able, be a comfort to and support your wife. Encourage her and remind her that you are a team and although she is growing your baby and carrying the weight of this sickness, you are right beside her every step of the way to help whenever and however you can,” says Amy. “Your wife will no doubt already feel bad for the extra burden she is placing on you, so remember to be gentle with her.”

That extra burden can be very real for partners.

“It’s a huge challenge for [loved ones] because [those suffering hyperemesis gravidarum] aren’t going to be able to do much; you’re going to have to take care of both her and the house and keep things running while still working,” says Tom. “That’s why it’s really important to rely on your community for help.”

3. Assemble a team of support

Don’t be afraid to ask for and accept help for your family, whether it’s to do your laundry, clean your house, or do your grocery shop.

“Ask your community for help,” says Tom. “It is hard to ask for help. Our societal expectations demand that we be able to take care of our family all on our own, but in situations like this, that is impossible. At one point, our community set up a meal train to provide dinners for us. Taking that off of my list of things to do made my life so much easier. Just don't be too proud to accept help. That’s what really got us through.”

For Amy, her decision with Tom to accept help was literally lifesaving.

“I can’t stress enough to just put it out there that you need help and what kind of daily, weekly, monthly help you need in order to survive your pregnancy,” she says.

2. Be an advocate.

“The most frustrating thing for me was going into my appointments and feeling like I was not being seen and heard and advocated for,” says Amy.

This experience is one that is unfortunately all too common for women with HG, and because of this, it's incredibly important for them and their partners to be informed about the differences between morning sickness and hyperemesis gravidarum, when to ask their obstetrician to test her ketone levels, when to push for medication or intravenous fluids, and when to go to a hospital.

“When a woman is ill and feeling like they're about to throw up, they're not going to speak out to their doctor when their doctor says something that they don't agree with. Like, ‘Oh, just take crackers,’” says Fezjo.

“So, women need to have either a family member or friend go to the doctors’ appointments and speak up for how ill they are.”

1. Don’t forget your own self-care

The adage that “you can’t help others until you help yourself,” rings particularly true for partners of those with HG. In light of a partner’s debilitating physical and mental health, it’s easy to dismiss the psychosocial burdens that being a caretaker for a loved one can have.

“Find someone you can talk to and vent to when you need,” says Amy.

“My husband was really lucky to have a few key people in his life he could turn to when he was feeling especially stretched and overwhelmed.”

“That’s what really got us through,” adds Tom, “especially when both of us were burned out.”

“Do whatever you can to find comfort moment to moment or day to day. This may sound impersonal and somewhat removed, but when you go through something like this during pregnancy, it becomes so much more about just surviving than about thriving,” says Amy.

Life after birth

This October Fezjo and her colleagues presented their latest findings at the American Society of Human Genetics Conference. Fezjo’s team found evidence that the cause of hyperemesis gravidarum is actually genetic and tied to a vomiting hormone.

Drugs targeting this hormone are currently under intense investigation to treat obesity, cancer, and cachexia (a kind of bodily weakness), and could potentially be used to treat hyperemesis gravidarum, but this will take time. One drug, an inhibitor of this hormone, is in phase two of clinical trials but it will be years before it is tested for its original purpose of treating cancer, and years more after that to test its effectiveness against hyperemesis gravidarum.

The idea that hyperemesis gravidarum resolves spontaneously during pregnancy is a “misconception” that “has led to limited progress in developing and testing new treatments for HG,” says Fezjo.

At the end of nine months, most women with hyperemesis gravidarum will deliver a baby, their symptoms will largely end, and, despite months of agony, the stakes are no longer high enough to rouse passionate medical research.

“We’ve always imagined we would at least have a few kids.”

But for those who still remember the pain of hyperemesis gravidarum, and for the thousands of women who will suffer in the future, hope could be on the horizon.

On June 12, 2021, Amy and Tom welcomed a little girl to their family.

“Seeing her lifted up in front of me and meeting my daughter for the first time, it was the most intense and glorious and beautiful moment of my life,” says Amy.

But the idea of giving their daughter siblings is fraught.

“It’s crazy because we’ve always imagined we would at least have a few kids, and though I don’t know what lies in store for us, knowing I could go through HG again is something I have a hard time wrapping my head around.”

Amy’s symptoms, like most women with hyperemesis gravidarum, disappeared the moment she had the baby. She was able to start work and chores again. After months of trauma, being new parents eclipsed the fact that Amy and Tom had been gaslit by the medical-industrial complex for the last nine months.

“It was so easy in the early days postpartum to look at our beautiful little girl and forget all about the HG,” explains Amy. For an illness that has been dismissed, misdiagnosed, and under-studied for centuries, that seems to be where it prospers, in forgetting.