Most of us take our ability to eat and drink for granted—and rarely is there a time more important to stay nourished and hydrated than when pregnant.
For most of my life, I never worried about whether I could keep down a glass of water. But when I developed hyperemesis gravidarum (HG) with my twin pregnancy, a pregnancy disability often referred to as the “morning sickness from hell” with no known cure, I became so ill I had to go to the hospital multiple times because I couldn’t even keep down ice chips.
Kate Middleton’s diagnosis with HG brought much-needed awareness to this dangerous disability, which afflicts up to 3 percent of pregnant women but is often misdiagnosed or dismissed until a woman is so ill she needs to be hospitalized.
Letting a treatable illness progress to that point is an atrocity of its own—let alone when there is a second life hanging in the balance. HG is such a horrific experience for those afflicted that half of the women consider terminating the pregnancy, according to one study, and according to another, 15 percent actually go through with it because their doctors don’t provide them with other options besides “just deal with it.” This is devastating because there are many treatment options available for HG if women are diagnosed and doctors care for them properly.
Why is HG so often dismissed or misdiagnosed? Women are often worried that treatments will hurt their baby, or that they can’t afford it. When they do seek treatment, many doctors aren’t well aware of HG, are unaware of treatment protocols even if they do properly diagnose it, or fall into the common trap of misbelieving women’s symptoms and thinking it’s all in their heads.
The psychological toll of HG, cited to be one of the most devastating side effects (which is saying a lot when you are literally starving), reared its head as I began worrying constantly about the state of the babies.
The famous author Charlotte Bronte is one example of a woman whose hyperemesis was misdiagnosed or was dismissed by doctors. Her doctor declared she died of tuberculosis, but some scholars believe her death can actually be attributed to HG; at the time, she was just being “neurotic.”
In my case, I began experiencing nausea and vomiting almost as soon as I discovered I was pregnant. At first I wasn’t worried about it. But it never got better. I missed days of work and was so exhausted when I got home that all I could do was lie down. I couldn’t smell food without vomiting—sometimes I couldn’t even think of food without vomiting—and some days I could only eat fruit popsicles or dry cereal. I felt like I was literally starving, yet any time I tried to eat anything, it would make me wildly sick or come right back up. I lost over 7 percent of my pre-pregnancy weight. The psychological toll of HG, cited to be one of the most devastating side effects (which is saying a lot when you are literally starving), reared its head as I began worrying constantly about the state of the babies (by week eight, my wife and I had discovered I was carrying twins).
My OB-GYN and many friends offered suggestions: Ginger! Unisom! Applesauce! Constant small snacks! Motion-sickness wristbands! Nothing improved, and over Christmas, at nine weeks, I was so ill I was vomiting up stomach bile and vomit that looked like coffee grounds, which can be an indication of internal bleeding. Essentially I’d been vomiting so violently that I was literally tearing my upper GI tract.
At the ER the next day, they started me on IVs with fluids and nausea medications. My labs came back with low electrolytes, low blood volume, and increased ketones, which meant I had become so undernourished that my body had entered ketosis and begun to devour itself to feed my babies. My mental anguish over the danger to the babies (let alone me) felt justified: Yes, babies take what they need from the mother’s body—which is why a normal amount of vomiting during pregnancy doesn’t harm the baby—but at some point, the mother’s body won’t have anything left to take. The babies taking what they need from me won’t do anyone any good if I’m dead.
I had been communicating with my OB-GYN up till the ER visit about how ill I was, and I absolutely feel like there was an element of medical dismissal, of “oh everyone feels sick in the first trimester”; it’s sobering that it took me becoming so ill I needed emergency intervention in order for my symptoms to be treated. Even so, I was fortunate: Once I was diagnosed with HG, my OB-GYN did take it seriously and ordered me biweekly IVs with vitamins and nausea medication at the hospital and daily nausea medication at home.
I was worried about going on medication while pregnant, but most of the common HG medications have substantial research behind them, and the guaranteed side effects of HG to the unborn babies were stark: If I wasn’t able to get treatment to provide them and me with proper nutrition and hydration, HG could lead to permanent fetal neurological, skeletal, or physiological damage or even fetal death. For me, HG could lead to life-threatening neurological complications like Wernicke’s encephalopathy or GI complications such as tearing or fatally rupturing my esophagus, and the malnutritional impact of HG can lead to a variety of issues that can progress to heart failure, respiratory failure, anemia, hypothermia, severe fatigue, and an inability to fight off infections or bacteria.
It’s sobering that it took me becoming so ill I needed emergency intervention in order for my symptoms to be treated.
I hadn’t progressed to this point yet, but I was still wildly ill. If I sat up for longer than 15 minutes, it might trigger vomiting. I lost my job because they didn’t want to accommodate the amount of medical leave I needed, which added severe financial stress. I didn’t even have the energy to text or call friends, let alone leave the house to see them, so I experienced strong social isolation and loneliness. I couldn’t fathom living like this for another seven months, and it was almost guaranteed to only get worse without treatment.
After starting the nausea medication, I (slowly but surely) began eating and drinking and gaining weight. By pregnancy week 14 (six weeks after the initial ER visit) I finally hit my pre-pregnancy weight again.
But what had caused my HG in the first place? HG is still understudied, so many factors are unknown. But it’s thought that the growth and hormones of the placenta contribute to it, which is why a multiples pregnancy (like mine) is more likely to contract it: two placentas = double the hormones.
HG is the leading cause for hospitalization in early pregnancy, so learning the symptoms can save lives. If any of your relatives have had HG, you are significantly more at risk. But you are also more at risk if you have a multiples pregnancy, this is your first pregnancy, or you have a history of motion sickness or migraines.
There are no clear and agreed-upon diagnostic criteria for HG, but the HG Foundation provides several telling HG symptoms: weight loss between 5 and 10 percent of pre-pregnancy weight, ketosis, frequent or intense vomiting and/or nausea, serious fatigue, inability to work, and dehydration. Most women who get hyperemesis begin experiencing their symptoms early, between weeks four and six, whereas more normal nausea/vomiting starts more between weeks six and nine. If you feel nausea symptoms earlier, it doesn’t mean you’re going to contract HG! But it does mean you can keep an eye out for worsening symptoms and track what’s normal and what’s not: The HG foundation provides a suggested checklist for you to use and has so many resources for you to bring to a doctor’s appointment and advocate for yourself if you suspect something’s wrong.
It’s not normal to go to the ER for dehydration during pregnancy. It’s not normal to vomit so much you tear your esophagus. It’s not normal to lose between 5 and 10 percent of your weight after getting pregnant.
So, as of now, the plan is for this to be my only pregnancy, and I’ve definitely experienced a lot of grief over how so much of the pregnancy was just about surviving it, not enjoying it.
But HG has many treatment options available, so even if you do become ill with HG, there’s a light at the end of the tunnel (check out the HER Foundation for ways to advocate for yourself). And all the moms in my HG Facebook group posting photos of their babies assure me that, at the end of the day, it’s worth it when you hold your beloved one in your arms.
HG has definitely taken a toll: I’ve joined over one-third of HG moms who decided to have only one pregnancy because our experience was so awful and we don’t want to join the 75 percent of moms who have a recurrence of HG in subsequent pregnancies. So, as of now, the plan is for this to be my only pregnancy, and I’ve definitely experienced a lot of grief over how so much of the pregnancy was just about surviving it, not enjoying it.
However, even though I was not one of the lucky moms whose HG symptoms clear up at 14 weeks, with IVs and nausea medication my symptoms eased drastically. I went from vomiting daily to vomiting only several times a week to vomiting once a week or less during the remainder of my pregnancy. Nausea medication didn’t eliminate my nausea or enable me to eat full balanced meals, but it did broaden the repertoire of foods I could eat beyond “popsicles and dry cereal.” Once I was able to start gaining weight and eat more nutritious (albeit limited) foods, my anxiety over the state of my babies eased drastically. I was able to enjoy more of the little moments like feeling my babies kick, rather than being constantly worried that I or my babies were starving. Even though I still feel sick often, the treatments are keeping me stable and the babies healthy, and I find myself more and more excited to meet them—and yes, also excited to finally eat a huge, nutritious meal once they’re here.