When Katrina Edgerton-McCutchan became violently ill six weeks into her first pregnancy, she thought she had the flu. "I started vomiting uncontrollably," she says. "Within six or seven hours I was at the hospital because I was so dehydrated."
She was sent home with medicine to control her vomiting and the hope that things would get better after 12 weeks – like everyone assured her they would. But the medicine barely helped, and her symptoms persisted throughout her pregnancy, landing her in and out of the hospital for months and turning her world upside down.
"I had no energy," says the 33-year-old attorney from Alberta, Canada. "I was miserable. I had crazy food aversions, and I'd throw up in my car while driving past the grocery store, just thinking about the food inside, or in my boss's trash can while on a conference call in his office."
But she felt it was all worth it after her healthy baby girl was born. Her second pregnancy, however, was even worse, and, this time, Edgerton-McCutchan was diagnosed with hyperemesis gravidarum (HG), a rare condition that affects up to 2 percent of pregnant women.
"I was on all the medicines possible, and I was barely functioning," she says. She struggled to keep up with her demanding job and take care of her toddler, and worried constantly whether her baby was getting enough nutrients.
Seeing the emotional toll the illness was taking, Edgerton-McCutchan's primary care physician suggested she see a mental health professional. But she was too exhausted and overwhelmed with other doctor's visits to make an appointment. Looking back, she's fairly certain she was depressed throughout her pregnancies, which she calls "very dark times."
Even 18 months later, she says the experience has had lasting ramifications. "We wanted to have four kids and have them right after one another," she says. "But the idea of being pregnant again is so incredibly horrifying to me, we haven't been able to even discuss it at all. I really want another one, but I can't wrap my head around suffering like that again."
The facts about HG
HG is often referred to as "extreme morning sickness," but the condition is more than its nickname implies: Nausea and vomiting during pregnancy usually go away after the first trimester. HG, on the other hand, tends to last for the entire pregnancy. And the persistent nausea and vomiting of HG often results in dehydration, weight loss, malnutrition, and electrolyte deficiencies, says Shereen Russell, an ob-gyn at Lenox Hill Hospital in New York City. HG is the second most common reason for hospital admission during the first half of pregnancy, after preterm labor.
Left untreated or treated inadequately, HG can also lead to miscarriage and long-lasting health issues, such as kidney and liver damage. It can also increase the risk of health problems for the baby, such as low birth weight, preterm delivery, and physical and developmental delays.
The myth of a psychological cause
Still, relatively little is understood about HG. Like typical “morning sickness,” HG may be related to the physical and hormonal changes of pregnancy, but it's still unknown what triggers such extreme and long-lasting symptoms, and why they affect some women but not others.
It's also clear that HG is not a psychiatric or a psychosomatic condition, although that is not how it has been viewed historically. The idea that HG had a psychological cause—like anxiety or "hysteria"—was first proposed in the early 20th century, says Kimber MacGibbon, RN, who co-founded the HER (Hyperemesis Education and Research) Foundation after enduring the condition during two pregnancies.
This led to severe mistreatment of women with HG, says MacGibbon. Because it was believed that women were faking or over-exaggerating their symptoms (either for attention or to receive an abortion), they were reprimanded, committed to psychiatric wards, or isolated from their families as "treatment," she says.
These beliefs were perpetuated for years by biased, poorly designed studies. Despite newer research that has debunked this idea and found no link between HG and preexisting psychiatric conditions, the myth sometimes persists today, both within and outside the medical community.
Marlena Fejzo, PhD, a faculty researcher in the departments of medicine and obstetrics and gynecology at UCLA, has coauthored research showing that HG's most significant risk factor is having a sister with HG, which suggests a strong genetic component to the disease. She's also identified specific gene variants that seem to be more common in women with severe HG.
These and other studies have helped change the medical community's perception of HG, but not entirely. "Even now that doctors accept it's genetic, a lot still think it can also be psychological," says Fejzo, who lost a pregnancy to HG in 1999, "even though there's no evidence."
All this can make suffering from HG even harder: Not only do women feel abjectly horrible during what's supposed to be a joyous time, but they're often patronized or treated with skepticism by their friends, family, coworkers, and even their doctor.
The emotional impact of hyperemesis gravidarum
HG may not have a psychological cause, but it certainly has psychological consequences. In a 2007 study of more than 800 women who'd experienced HG, 15 percent had symptoms so severe they'd chosen to terminate their pregnancies.
Other studies have shown that women who suffer from HG have higher rates of mental health problems during and after pregnancy, even after their symptoms subside. These can include depression, anxiety, and post-traumatic stress disorder.
And according to a 2011 study in the Journal of Maternal, Fetal, and Neonatal Medicine, these issues can also lead to breastfeeding trouble, marital and financial problems, and mothers' inability to care for themselves and their children.
Many women also have a hard time facing the thought of getting pregnant again, especially because HG has a high recurrence rate. In one study, 37 percent of women with HG said they were considering or planning not to have any more children.
How to cope with hyperemesis gravidarum
If you're living with HG, it's normal to feel frustrated, alone, and scared. But seeking help and finding ways to manage your symptoms may make your condition easier to cope with.
Find a doctor who won't give up. Unfortunately, not all doctors understand just how bad HG can get, says Russell. If yours doesn't take your condition seriously, find one who will. Fejzo agrees: "Having a good doctor can be the difference between a woman terminating her pregnancy and [lasting] all the way through," she says.
Keep trying different medications. The good news is that medications can alleviate the worst symptoms for most women. So if one regimen doesn't help, work with your doctor to keep trying: You may need a different drug, a different dosage schedule, or a different method of administration (through an IV if you can't keep pills down, for example).
"We have lots of options," says Russell. "If someone comes to me and says, 'I want to terminate this pregnancy. I can't do it because I feel so sick,' I want to help her understand that it's going to be ok and that we'll find the right medicine if we work together."
Get support. If you're feeling depressed, hopeless, or even just stressed and overwhelmed, talking to a mental health professional or connecting with other women who have had HG can help.
You can also find sources of support online. HelpHER.org is home to message boards, an HG-friendly physician locator, and research articles as well as tips for mothers, friends and family, and health care professionals.
Know that it's ok to feel whatever you're feeling. It's important to know that being sad or upset during this time is ok, says MacGibbon. "Women give themselves a hard time when they're not excited about their pregnancies," she says, "but when you have HG, you really just need to make it through every day."
Be your own health advocate. "Make sure you're getting enough fluids, and ask your doctor about a vitamin B shot if it hasn't been prescribed to you already," says Fejzo. Vitamin B deficiency can cause rare but serious neurological problems for women who become malnourished, "but it's easy to prevent with an injection," says Fejzo.
Be prepared for recurrence. Research suggests that women who have HG during one pregnancy have an 81 percent chance of having it again in subsequent pregnancies. So while you're still feeling good, do what you can to prepare: Make a plan with your doctor (or find a new one), stock the house with foods you could tolerate the first time, and fill prescriptions for medications to control your symptoms.
How to support someone who has hyperemesis gravidarum
Take it seriously. If you know someone who is suffering from severe nausea and vomiting or who has been diagnosed with HG, don't trivialize their situation. "The worst was when people would tell me, ‘Just keep some crackers by your bed,'" says Edgerton-McCutchan. (That response is so common, in fact, that the HG community’s given it a name: "Getting crackered.")
Respect their needs. "People thought I was being dramatic if I said I couldn't go into a certain restaurant or I had to eat at very specific times," Edgerton-McCutchan recalls. "They didn't understand how sensitive I was to just the sight or smell of food."
This advice applies to a woman's good moments too, says Fejzo. "When she says she feels like she could eat a certain thing – like yogurt at 11PM – you need to get that for her right away," she says. "That feeling probably won't last too long, and you need to take advantage of it."
Be an advocate. Friends and family may need to advocate for a woman with HG by convincing her to see a doctor or even taking her to the hospital. "When you're in this situation, you may not be able to see how sick you really are," says Fejzo. "In extreme cases, you really lose the ability to take care of yourself."
Lend a hand. For a woman whose symptoms are being managed by a doctor, you can still make a big difference. Even with medication, it's unlikely she feels up to cooking, doing housework, and running errands. Small gestures of assistance – like dropping off frozen meals to pop in the microwave – will make a big difference.
Offer hope. "Letting a woman know that you're there for her, and giving her hope that it's going to be worth it in the end, can be helpful," says MacGibbon. "It may not seem like much, but hope is crucial."