Thembi Johnson remembers the last real meal she ate when she was pregnant with her daughter in 2011. She was about six weeks along and went out for pizza. She didn’t feel great, but she managed to eat a slice or two. The next day, everything changed. Every single food she put in her mouth came right back up. Every single smell made her nauseated.
Johnson went to her doctor for answers and was diagnosed with hyperemesis gravidarum (HG), a condition marked by severe nausea, vomiting, weight loss and dehydration during pregnancy. Johnson had them all. Two weeks after she was diagnosed, she was hospitalized for severe dehydration. Soon after she went into the hospital again, this time staying for almost a month. Johnson eventually required a home nurse who helped her get all of her nutrition intravenously, and was hooked up to a portable pump that gave her a constant stream of anti-nausea medication. She did not consume any actual food for more than a month.
“I remember one day I got back from the grocery store and I was so weak, all I could do was get to the front door. Then I crawled to the bathroom and laid there ― after dry heaving ― with my cheek on the tile floor,” she recalled. “Two hours later, that’s how my husband found me. The door to the house was wide open. The car door was open. He saw my feet hanging out the door and thought I was dead.”
Hyperemesis gravidarum is back in the news with the announcement that Kate Middleton ― the world’s most famous HG sufferer ― is pregnant with her third child and once again struggling with the condition, cancelling planned appearances and missing the first day of school with her son on Thursday. While Middleton has done more than just about anyone to draw attention to HG, some are still quick to dismiss her diagnosis as nothing more than an overblown excuse to lay low. “Why the fuss over morning sickness?” said one commenter on The Daily Mail. Headlines and articles have unwittingly downplayed the seriousness of HG by labeling it “severe morning sickness.”
People have this notion that everbody exaggerates everything, but in this situation you don't have to exaggerate. It's as bad as you can imagine.
But as the harrowing pregnancies of moms like Johnson make clear, describing HG as simply a more intense version of the nausea and vomiting most pregnant women encounter is not only dismissive; it’s potentially dangerous. And it means that many moms-to-be end up suffering alone.
“You just want to yell at people, ‘It’s not the same!’” Johnson said. “People have this notion that everybody exaggerates everything, but in this situation you don’t have to exaggerate. It’s as bad as you can imagine.”
NOT morning sickness
Soon after the latest royal pregnancy was announced, HuffPost Parents posted a callout on its Facebook page looking for women willing to talk about their experiences with HG. Within 24 hours, more than 100 e-mails poured in. Women called themselves “HG survivors” and described battles with extreme weight loss and vomiting more than 20 times a day. Again and again they emphasized one point: Morning sickness and HG are not the same thing.
Certainly morning sickness ― which affects roughly 70 percent of moms in the first trimester ― can be hard, but it’s generally not harmful for women or their babies and tends to fade. HG, on the other hand, absolutely puts women and babies at risk. These are the moms-to-be who vomit more than three to four times a day, who are unable to keep down any food and who lose more than 5 percent of their pre-pregnancy weight. The Oregon-based Hyperemesis Education and Research Foundation (HER) says these women tend to have nutritional deficiencies and metabolic imbalances that can be life-threatening.
I honestly thought we were dying. I'd cry, but was so dehydrated I had no tears...I was vomiting so hard I hit my head on the toilet and passed out.
“It’s one of the hardest feelings to describe,” a mom who was hospitalized 14 times in the first half of her pregnancy wrote in an e-mail to HuffPost. “Feeling like you’re going to die at any given moment is an understatement. It literally changes your life — being so tired your muscles hurt, so dehydrated your head pounds non-stop, getting so used to throwing up you can feel it a mile away.” “I honestly thought we where dying,” another wrote. “I’d cry, but was so dehydrated I had no tears. At one point I was vomiting so hard I hit my head on the toilet and passed out.” That woman lost her job and suffered from post-traumatic stress disorder.
Carla Rose, 30, a single mother of now 1-and-a-half-year-old twins, told HuffPost that she was forced to go to the hospital two to three times a week to get IV nutrition and fluids. Early on in her pregnancy, she was vomiting more than 20 times a day. By her second trimester, Rose was on a cocktail of medication that limited her vomiting to five or six episodes daily, but she never reached a point when she was not regularly throwing up. At 25 weeks, she went on complete bedrest and took leave from her teaching job after passing out in the classroom. She was so weak, she often relied on a wheelchair to get around.
“The only thing you can think about is how terrible you feel,” Rose said. “I would live on the bathroom floor because I could not stop vomiting. I was literally green. Like, people would come up to me and say ‘Your skin color is green.’”
“My girls are beautiful and healthy,” she added, “but they ate me alive.”
No clear answers
Current estimates suggest that between 0.3 and 2.3 percent of all pregnant women experience HG, though it’s possible the numbers are higher because some women don’t seek treatment for it. The HER Foundation’s executive director Kimber MacGibbon, a registered nurse and an HG survivor herself, told HuffPost the site gets half a million visitors every year and has more than 13,000 followers on Facebook.
The hormones associated with pregnancy ― namely estrogen ― are thought to play a key role, though MacGibbon told HuffPost researchers are increasingly interested in the role that genetics play. A 2010 study also found that HG may be hereditary to some degree, but the exact causes remain unknown. MacGibbon did note that having a seemingly healthy (and obviously privileged) woman like Kate Middleton become the public face of HG has at least helped debunk the notion that it’s caused by women not taking care of themselves or looking to get attention.
It’s really impossible for a woman without complications to comprehend the turmoil we live through.
Treatment options do exist ― generally through IV nutrition and fluids, as well as prescription anti-vomiting medications ― but full relief isn’t on the table. The goal is to keep mom and baby safe from serious complications like low birth weight, thyroid and liver problems and the kind of severe dehydration that can hospitalize women for weeks on end.
“You can treat it, but treatment doesn’t equal zero symptoms,” MacGibbon said.
About half of women find their symptoms subside by the time they’re midway through their pregnancy, while the rest struggle the whole time. But women in both groups say the memories of HG ― of hour upon hour spent vomiting on the floor, or finishing a pregnancy weighing less than they did when it began ― stay with them for a long time.
Take Robyn, a 47-year-old who asked that only her first name be used, who vomited violently throughout all three of her pregnancies, but had particularly severe HG with her second in 1991. She had to carry around a bucket for her spit because she threw up every time she swallowed. More than 20 years later, she can still recall how she would dry heave for 15 minutes at a stretch, breaking all of the blood vessels in and around her eyes. Or how she’d sit helplessly with her head over a bucket, letting her saliva stream down so she wouldn’t have to throw up again.
“I don’t think anyone truly understands it unless they live it or live with a woman who has it,” Robyn said. “It’s really impossible for a woman without complications to comprehend the turmoil we live through.”
- This article originally appeared on HuffPost.