Why Is This Devastating Pregnancy Illness Not Taken Seriously?
By Clementine Wallop
Hyperemesis gravidarum is a debilitating condition affecting about 1% of pregnancies. But treatment of it can be dismissive.
I don’t know what the time is. I don’t know what day it is. I don’t know when I last left the house. I do know that the best thing right now is the feeling of the toilet seat against my cheek when I rest between violent, lurching retches.
I know the taste in my mouth shouldn’t be there: ferrous, like I licked an iron bar. I know that when I lift my head up to vomit, what was food a few pukes ago has now become frightening — the insides of my insides are coming out. There’s blood from somewhere, that’s the iron taste — but there’s also another substance, which is brown. There’s acid too, a happy-face yellow. The acid has burned my throat, which has tired to the point where bright blood — familiar blood-colored blood — comes up in speckles with the brown and the yellow. It’s out of my nose too, this stuff, this inside-outing. The walls of my nose are fragile from vomiting: easily breaking, easily burned.
This episode, around 17 weeks of pregnancy, dries me out so much that I’ll end up in the hospital with drips pumping me full of drugs and fluids. Nurses initially think my speeding heart rate, 170 beats per minute, must be a mistake. Up to then, I had assumed I was struggling more than most people with morning sickness, but it was at this point that the doctors officially diagnose me with hyperemesis gravidarum (HG).
The insides of my insides are coming out.
Though more than half of people suffer nausea or vomiting when expecting, HG affects around 1% of pregnancies, according to UK-based charity Pregnancy Sickness Support (PSS). Its cause is unknown, though some research connects it to the production of the pregnancy hormone human chorionic gonadotropin. Its most basic symptoms — nausea and vomiting — are similar to morning sickness on paper, but this is no morning sickness.
“HG is a form of torture, feeling constant and intense nausea 24/7 for months on end — and that’s before the relentless vomiting and retching,” says Caitlin Dean, nurse specialist in hyperemesis gravidarum and chairperson for Pregnancy Sickness Support.
Hyperemesis gravidarum affects around 1% of pregnancies.
“It is a serious, potentially life-threatening condition, which can have long-term negative outcomes for both mum and baby if treatment is not timely and appropriate,” she explains. “Research has shown that malnutrition and dehydration in early pregnancy can have a lifelong impact on the growing fetus, in addition to the impact on mom.”
These long-term effects can be both physical and psychological, because in the most basic ways, these are not normal pregnancies; the fun of getting ready for the baby is set aside for time to sleep and be sick. Expected physical changes are subverted. We get thin instead of round. Our eyes become lost in shadows from sleep broken by sickness. We are so weak that we sweat and shake after even a short walk. We hate to eat, but we have to eat, so the menu becomes selective; we put in what won’t hurt when it comes out again. For me, that’s ice cream, soups from cans, chocolate milk. Chocolate milk on an acid burned throat doesn’t test you — it’s an easy puke.
“HG sucked the life out of me. From my energy and my physical weight to…getting up and getting things done. Not only was I not capable of doing simple daily tasks, but HG kind of instilled a fear in me to do them, just in case it would trigger it,” says Rivka, a mom of one pregnant with her second HG baby.
“HG not only starts to eat away at you and your body, [it] creeps its way into your relationships, friendships, work life,” she adds. “People . . . think you’re attention-seeking or that you just don’t want to cook or clean.”
This dismissive treatment can extend to medical professionals. There is no specific test for HG, which is perhaps part of the reason it is sometimes passed off as morning sickness or hypochondria. In most cases, nurses can detect a problem by checking your urine for ketones, which indicate the body is burning its own fat reserves. Weight loss and an elevated heart rate, not to mention the frequency of vomiting episodes, can also provide indicators.
My own care has been exemplary, but accounts of mismanagement are commonplace.
Kelly, a mom of two girls who works as a nurse, says her profession meant health-care providers took her seriously, although she remembers a midwife refusing to refill a prescription for Zofran, an anti-nausea medication, because she was in her second trimester and shouldn’t have been sick anymore. Some HG moms, however, vomit through the entire pregnancy.
“Many nights I slept on the bathroom floor and cried because I was so sick, so tired, and felt like a bad mom and wife. I believe that until you suffer from HG or know someone who has, you cannot truly comprehend what it’s like. It truly is hell . . . Healthcare providers working in the obstetrical setting need to take HG seriously,” Kelly says.
“I would say that the vast majority of women who contact our helpline have had negative experiences with healthcare professionals,” says PSS’s Dean. “As a charity for the condition, our women are biased toward the negative experiences. However, given that we receive between 30 and 50 calls each week, most of whom are receiving awful treatment or even being refused treatment, there is clearly still a massive problem with the way the condition is understood.”
‘Many nights I slept on the bathroom floor and cried because I was so sick.’
She attributes this mismanagement to factors including an assumption that all morning sickness is the same and a reluctance to prescribe medication to pregnant women following the Thalidomide tragedy of the ’50s and ’60s. Worldwide, some 10,000 children were born with limb deficiencies after their mothers took Thalidomide while pregnant to alleviate morning sickness. Doctors had thought the drug was safe for pregnant women, and though medicine now available to treat nausea has advanced, an understandable nervousness persists. My doctor passed me my meds with the words, “Don’t worry, it’s not Thalidomide.”
Those carrying their first babies are at an additional disadvantage because they have no frame of reference.
“I was pretty much ignored in my first pregnancy. Even though I dropped 15 pounds, going from 120 to 105, and told them my situation, they said that it was normal morning sickness. I was young and didn’t know any better, which is why I didn’t fight harder,” says Rhiannon, a mom of two who is expecting a third child and enduring her third HG pregnancy.
She heard it in his voice; he was rambling. There was a prolonged silence. She asked if she was getting fired.theestablishment.co
Though HG is more likely to affect first-time parents, the condition can be so damaging that fear of recurrence can have an impact on family size. “Hyperemesis has absolutely been the determining factor in our family’s size. My husband is taking permanent measures, and I am taking measures to make sure that I will never be pregnant again,” says Rhiannon. “I initially had wanted six kids, but we will be done at three,” she continues. “I have been depressed, wanting to commit suicide at some points, and even considered terminating, which is against everything I believe in as I am pro-life.”
Sufferers say the key to offering better treatment is straightforward: Listen.
“Far too often I hear of women who I know to be articulate and sensible being fobbed off with, ‘You need to think positively’ or being refused medication they know worked for them,” Dean says. “The main thing is simply to believe women when they are describing their symptoms.”
So that is why, in all of this, I remind myself that I am lucky. I am lucky because my husband, editors, and friends are supportive. And this support is crucial as hyperemesis is a thief: It steals my appetite, productivity, work, earnings, conversations, and social life. Thirty percent of pregnant people take time off work due to nausea and vomiting during typical pregnancies, but with HG, work is unthinkable. I earned no money in May and June, and turned down work worth thousands of dollars.
‘The main thing is simply to believe women when they are describing their symptoms.’
Still, I “only” puked 13 times a day before seeking treatment. Some sufferers vomit 40 times. I have all my teeth; the daily acid bath isn’t as kind to others. I also have all my hair. My thoughts haven’t strayed to self harm. I haven’t considered terminating.
Today, I am what passes for well. Six months into my pregnancy, I still vomit once or twice in the morning, and I take meds every day. I expect this to continue through the next three months, but with the right help I also hope my third trimester will be my best. HG sufferers often hear that after pregnancies like ours, labor will be easy. I don’t know if I believe that, but I still believe that this pregnancy and whatever labor comes with it will be worth the struggle, the nights throwing up acid and lying on the bathroom floor.
Would I consider going through it all again, risking a condition that’s taken so much?