When Hyperemesis gravidarum is treated as Hysteria
November 4, 2019 8:03 AM Subscribe
Hyperemesis gravidarum is dangerous, and treatable. Why does the medical community still ignore it? It wasn’t until the third OB-GYN discounted my symptoms with a casual, “Morning sickness is a doozy isn’t it?” that I started feeling mildly conspiratorial. It had only been three weeks since my positive pregnancy test, but I had already lost 17 percent of my body weight. My urine was orange. I constantly felt dizzy and lightheaded and was unable to keep water down without vomiting. Food was out of the question. Somehow, all these symptoms were met with cheery suggestions to “try ginger” or “power through.”
It was a glorious ER visit that finally confirmed my suspicions. “Why didn’t you come here earlier?” the physician asked me. My symptoms weren’t “normal.” I had an extreme form of morning sickness called hyperemesis gravidarum that affects 1.5 percent of pregnant women. Best known as the shitty illness Princess Kate Middleton had, it is characterized by severe nausea, vomiting, and weight loss that jeopardizes the health of mother and fetus, hospitalizing at least 60,000 U.S. women a year. Before intravenous fluids were introduced in 1950, it was one of the leading causes of maternal deaths.
It was a glorious ER visit that finally confirmed my suspicions. “Why didn’t you come here earlier?” the physician asked me. My symptoms weren’t “normal.” I had an extreme form of morning sickness called hyperemesis gravidarum that affects 1.5 percent of pregnant women. Best known as the shitty illness Princess Kate Middleton had, it is characterized by severe nausea, vomiting, and weight loss that jeopardizes the health of mother and fetus, hospitalizing at least 60,000 U.S. women a year. Before intravenous fluids were introduced in 1950, it was one of the leading causes of maternal deaths.
I feel so, so fortunate that I had OB-GYNs who did not discount my symptoms when I had hyperemesis gravidarum with my pregnancies. I actually didn't know it was one of the leading causes of maternal death prior to 1950. That really puts it in perspective for me.
And even though I had very supportive OB-GYNs and my partner was 100% on board, there was always a little part of me that felt like maybe I was overreacting. That feeling isn't helped by other pregnant people/past pregnant people saying, "Oh, yeah, I was super sick too, I threw up like every day for a week! I was so glad when that passed!" Like, it never passed for me. I'm sorry you were sick but it definitely wasn't on the same level.
posted by cooker girl at 8:15 AM on November 4, 2019 [10 favorites]
And even though I had very supportive OB-GYNs and my partner was 100% on board, there was always a little part of me that felt like maybe I was overreacting. That feeling isn't helped by other pregnant people/past pregnant people saying, "Oh, yeah, I was super sick too, I threw up like every day for a week! I was so glad when that passed!" Like, it never passed for me. I'm sorry you were sick but it definitely wasn't on the same level.
posted by cooker girl at 8:15 AM on November 4, 2019 [10 favorites]
I worked at a hospital for 17 years. One patient was so allergic to pregnacy, she had a Miller Fredrick tube placed, and had tube fedings for the entire pregnancy. As soon as she delivered she went back to food. It is rare but it happens. Her babies were normal weight.
posted by Oyéah at 8:17 AM on November 4, 2019 [9 favorites]
posted by Oyéah at 8:17 AM on November 4, 2019 [9 favorites]
My SIL had it so bad she had a port installed, and had IV anti-nausea drugs that she carried around with her.
posted by suelac at 8:42 AM on November 4, 2019 [3 favorites]
posted by suelac at 8:42 AM on November 4, 2019 [3 favorites]
My sister-in-law went through this. We were frankly amazed when she decided to have a second child, given how brutal her symptoms were the first time around. During her second pregnancy she still vomited so often that when her pre-school age daughter played house she would mime vomiting into a bowl “like Mommy”.
posted by Secret Sparrow at 8:47 AM on November 4, 2019 [13 favorites]
posted by Secret Sparrow at 8:47 AM on November 4, 2019 [13 favorites]
that affects 1.5 percent of pregnant women
that we know of. HG runs in my family but I'm not sure my mother or my cousins were ever officially diagnosed. I wasn't. I figured it out because I had access to the internet and the hipmama.com forums. My cousin made it through her pregnancies because her mother is a nurse and could give her IV fluids at home after work.
When my mother was dying of terminal pancreatic cancer and undergoing her third round of chemo she told me, with a shudder, that it still wasn't as difficult as morning sickness.
posted by annathea at 8:56 AM on November 4, 2019 [18 favorites]
that we know of. HG runs in my family but I'm not sure my mother or my cousins were ever officially diagnosed. I wasn't. I figured it out because I had access to the internet and the hipmama.com forums. My cousin made it through her pregnancies because her mother is a nurse and could give her IV fluids at home after work.
When my mother was dying of terminal pancreatic cancer and undergoing her third round of chemo she told me, with a shudder, that it still wasn't as difficult as morning sickness.
posted by annathea at 8:56 AM on November 4, 2019 [18 favorites]
Yeah, the 1.5% number is thrown out there, unchallenged, in a story that's literally about how doctors don't believe women have this and don't diagnose them with it. I wonder what the number actually is?
posted by jacquilynne at 9:05 AM on November 4, 2019 [43 favorites]
posted by jacquilynne at 9:05 AM on November 4, 2019 [43 favorites]
I went through this three times. After the first, we hoped it wouldn't happen again. After the second, we knew it was a fact of pregnancy for me. Our third was unplanned, and we had a serious discussion about continuing the pregnancy (which we did) because we knew how debilitating the sickness would be and we had two young children to care for. They were all worth it, but damn.
I got a lot of "power through" and very little treatment. In my case, I firmly believe my symptoms and misery were downplayed or dismissed because I started out fat, so the weight loss wasn't screamingly obvious. But each time, one week after delivery, I weighted about 15-20% less than I had when the pregnancy began. Any pregnant woman who loses 15-20% of her body weight during pregnancy, while delivering full-term, full-sized infants, is ill.
For many, pregnancy is a glowing, healthy, breeze through it thing, and that is absolutely fabulous. For some, even if the pregnancy itself is healthy (I never had a single issue with the health or safety of the actual growing of the offspring), the process is brutal.
posted by Lulu's Pink Converse at 9:37 AM on November 4, 2019 [21 favorites]
I got a lot of "power through" and very little treatment. In my case, I firmly believe my symptoms and misery were downplayed or dismissed because I started out fat, so the weight loss wasn't screamingly obvious. But each time, one week after delivery, I weighted about 15-20% less than I had when the pregnancy began. Any pregnant woman who loses 15-20% of her body weight during pregnancy, while delivering full-term, full-sized infants, is ill.
For many, pregnancy is a glowing, healthy, breeze through it thing, and that is absolutely fabulous. For some, even if the pregnancy itself is healthy (I never had a single issue with the health or safety of the actual growing of the offspring), the process is brutal.
posted by Lulu's Pink Converse at 9:37 AM on November 4, 2019 [21 favorites]
Sigh, yes. I was thrilled when Kate Middleton was diagnosed because I could tell everyone that was what I had dealt with. Sorry for her, though, obviously. I always thought I would have four children, but instead I had two divorces. First time round I would have been divorced anyway, but the second time it was really sad, we are still best friends but went through a terrible time because he went into deep depression. I really wish there was wider knowledge of this disease and how to handle it.
The second time round I actually managed to eat a bit after 6 months, and my baby was fine. The first baby was a kilo underweight when she was born on her due date. My GP, a woman, never got it. The hospital was better, but I still don't know how I survived.
posted by mumimor at 11:37 AM on November 4, 2019 [5 favorites]
The second time round I actually managed to eat a bit after 6 months, and my baby was fine. The first baby was a kilo underweight when she was born on her due date. My GP, a woman, never got it. The hospital was better, but I still don't know how I survived.
posted by mumimor at 11:37 AM on November 4, 2019 [5 favorites]
In practice (GI), I got a number of calls to see women hospitalized with hyperemesis. There’s really a continuum of pregnancy related conditions from hyperemesis <> preeclampsia/eclampsia <> HELLP and I view them as related. About 50% of women with hyperemesis have elevated LFTs, which also are features of the other conditions in this spectrum, for example. (Of course, the frequent calls may have been because I was the only GI willing to see pregnant patients; the others in the department would simply refuse. But that’s a story for another time.)
Management of these patients is difficult because many antiemetics, particularly highly effective ones often employed for chemotherapy-related nausea, are not FDA approved for use in pregnancy. Many doctors refuse the prescribe them for fear of being sued if there was a ‘bad baby’ outcome. That is, if the infant had some defect or illness, you, as the prescribing physician, would be liable for a huge malpractice settlement. And, since you were using an unapproved medication, your insurance carrier would walk away. Further, in hospitalized patients, attempts to use these meds would be nixed by the pharmacy for fear that the hospital would become liable. So we had scenarios like mentioned above with patients suffering severe nausea and vomiting who would be managed with tube feeding or TPN - which doesn’t help the nausea. If you’ve ever been really nauseated, think of that lasting for months!
And why were these meds not FDA approved for use in pregnancy? Because the pharmaceutical companies would not spend the money to do trials in pregnant patients. They did it to avoid potential liability and becuse it’s a very small market segment. Undoubtedly, some of these meds would be (more) effective, but the history (e.g., thalidomide), the risk of multimillion dollar malpractice claims, and, yes, doctors’ misogyny and avoidance of ‘risky’ or ‘difficult’ patients means that the choice of the mother with a pregnancy complicated in this way is often either ‘tough it out’ or abortion.
posted by sudogeek at 11:51 AM on November 4, 2019 [34 favorites]
Management of these patients is difficult because many antiemetics, particularly highly effective ones often employed for chemotherapy-related nausea, are not FDA approved for use in pregnancy. Many doctors refuse the prescribe them for fear of being sued if there was a ‘bad baby’ outcome. That is, if the infant had some defect or illness, you, as the prescribing physician, would be liable for a huge malpractice settlement. And, since you were using an unapproved medication, your insurance carrier would walk away. Further, in hospitalized patients, attempts to use these meds would be nixed by the pharmacy for fear that the hospital would become liable. So we had scenarios like mentioned above with patients suffering severe nausea and vomiting who would be managed with tube feeding or TPN - which doesn’t help the nausea. If you’ve ever been really nauseated, think of that lasting for months!
And why were these meds not FDA approved for use in pregnancy? Because the pharmaceutical companies would not spend the money to do trials in pregnant patients. They did it to avoid potential liability and becuse it’s a very small market segment. Undoubtedly, some of these meds would be (more) effective, but the history (e.g., thalidomide), the risk of multimillion dollar malpractice claims, and, yes, doctors’ misogyny and avoidance of ‘risky’ or ‘difficult’ patients means that the choice of the mother with a pregnancy complicated in this way is often either ‘tough it out’ or abortion.
posted by sudogeek at 11:51 AM on November 4, 2019 [34 favorites]
There's also a lot of stigma in the way even if you have a cooperative doctor. I know mothers who stressed out a lot over taking Zofran and over telling anyone else that they were doing so, since the general implication is that it's evil to do something in your own interests instead of acting in the interests of the baby.
posted by value of information at 12:19 PM on November 4, 2019 [13 favorites]
posted by value of information at 12:19 PM on November 4, 2019 [13 favorites]
There was a recent study that sought to answer the question re: zofran and birth defects which you can read for yourself here. The TLDR version basically states that Zofran is safe to use, however, a secondary data set suggested that there may be a small association with increased rates of cleft palates and renal agenesis. At the ED I work in our pharmacists are fine with zofran in pregnancy and I use it without hesitation (although, we have a guideline which indicates you should start with pyridoxine/doxylamine, and if no improvement pursue other therapies).
posted by ghostpony at 12:25 PM on November 4, 2019 [2 favorites]
posted by ghostpony at 12:25 PM on November 4, 2019 [2 favorites]
sudogeek, thank you for clarifying the lack of testing of anti-emetics on pregnant women because my very first reaction was "why the fuck wouldn't her doctor prescribe Zofran?" Like, the minute my one of my cats show signs of not eating the vet says "oh, it must be nauseous" and I walk away with a bottle of it. I really hope that that's just off-label usage, because the idea that cats have gone through trials for Zofran but nobody has even tried for pregnant women is just infuriating. Obviously any medical testing on pregnant women carries risks--but when the alternative is miscarriage or death then what the hell are we doing?
posted by Anonymous at 12:32 PM on November 4, 2019
posted by Anonymous at 12:32 PM on November 4, 2019
The bar for approving medication for cats is significantly lower than approving it for humans.
posted by aubilenon at 12:53 PM on November 4, 2019 [4 favorites]
posted by aubilenon at 12:53 PM on November 4, 2019 [4 favorites]
Maybe the problem of undertreatment is more the fault of the legal profession?
posted by FungusCassetteBicker at 12:56 PM on November 4, 2019
posted by FungusCassetteBicker at 12:56 PM on November 4, 2019
Maybe the problem of undertreatment is more the fault of the legal profession?
No, and the way the medical community attacks lawyers to handwave away their sins is tiresome.
posted by NoxAeternum at 2:26 PM on November 4, 2019 [15 favorites]
No, and the way the medical community attacks lawyers to handwave away their sins is tiresome.
posted by NoxAeternum at 2:26 PM on November 4, 2019 [15 favorites]
Obviously any medical testing on pregnant women carries risks--but when the alternative is miscarriage or death then what the hell are we doing?
Even without the bizarre liability issues, medical testing during pregnancy (and on children) is fraught with problems. Who volunteers to take drugs with unknown (or at least, uncertain) effects during pregnancy? Who volunteers their young child for drug testing?
It's a way of pushing risks onto the poor and desperate, especially since any testing would come with extensive liability waivers.
I suspect the only way around this is "medicare for all" so that any long-term damage done is not a horrific financial burden for the rest of the mother/baby/child's life.
posted by ErisLordFreedom at 4:52 PM on November 4, 2019 [3 favorites]
Even without the bizarre liability issues, medical testing during pregnancy (and on children) is fraught with problems. Who volunteers to take drugs with unknown (or at least, uncertain) effects during pregnancy? Who volunteers their young child for drug testing?
It's a way of pushing risks onto the poor and desperate, especially since any testing would come with extensive liability waivers.
I suspect the only way around this is "medicare for all" so that any long-term damage done is not a horrific financial burden for the rest of the mother/baby/child's life.
posted by ErisLordFreedom at 4:52 PM on November 4, 2019 [3 favorites]
My horrifying HG was dismissed with sarcastic-sounding directives to “eat crackers.” I was desperately ill for two months before miscarrying. The entire experience was a nightmare. Of note, my doctor later murdered his wife.
posted by kinnakeet at 6:45 PM on November 4, 2019 [18 favorites]
posted by kinnakeet at 6:45 PM on November 4, 2019 [18 favorites]
kinnakeet holy fuck. First my deepest condolences and second... uh... your doctor did what?
posted by Homo neanderthalensis at 7:44 PM on November 4, 2019 [3 favorites]
posted by Homo neanderthalensis at 7:44 PM on November 4, 2019 [3 favorites]
No, and the way the medical community attacks lawyers to handwave away their sins is tiresome.
thank you, yes. 'of course I had to torture a pregnant woman, because if I hadn't, I might have been successfully sued for malpractice, which, as a doctor, I choose to believe is a worse agony than the one I inflicted, because it would be me it happened to' is not the kind of position reasonably decent people are able to decently reason themselves into.
posted by queenofbithynia at 10:57 PM on November 4, 2019 [16 favorites]
My ex-wife had this. She lost so much weight, and certain foods now forever make her gag. Yes, my pregnant wife is puking in the parking lot again at our kid's soccer game, deal with it. Her main complaint was that women with "ordinary" morning sickness would try to commiserate with her.
posted by Brocktoon at 11:02 PM on November 4, 2019 [3 favorites]
posted by Brocktoon at 11:02 PM on November 4, 2019 [3 favorites]
> Of course, the frequent calls may have been because I was the only GI willing to see pregnant patients; the others in the department would simply refuse. But that’s a story for another time.
Wait, what? GI docs refusing to see pregnant patients seems entirely related to the issue, & I'd be interested to hear the story if you're willing to share.
posted by Westringia F. at 5:42 AM on November 5, 2019 [2 favorites]
Wait, what? GI docs refusing to see pregnant patients seems entirely related to the issue, & I'd be interested to hear the story if you're willing to share.
posted by Westringia F. at 5:42 AM on November 5, 2019 [2 favorites]
My friend suffered with HG during her first pregnancy. She said she never would have done it herself, but that she would absolutely not judge any woman for having an abortion to stop the utter misery.
posted by killy willy at 6:56 AM on November 5, 2019 [4 favorites]
posted by killy willy at 6:56 AM on November 5, 2019 [4 favorites]
I had this 40+ years ago. At the time the guilt-tripping wisdom was that it was my fault because I didn't have a positive enough attitude. Fortunately, my OB-GYN told me to never let it go on more than half a day because of the dangers of dehydration.
Soda/saltines? Puh-leez! Flat, warm 7-Up? At times, I could not keep down slowly melting ice chips, much less an actual sip of water. The whites of my eyes were dark red from all the broken capillaries. I did not gain a single pound until my eighth month. After a difficult delivery, my OB-GYN advised me not to have any more kids. I listened,
posted by Altomentis at 11:20 PM on November 5, 2019 [7 favorites]
Soda/saltines? Puh-leez! Flat, warm 7-Up? At times, I could not keep down slowly melting ice chips, much less an actual sip of water. The whites of my eyes were dark red from all the broken capillaries. I did not gain a single pound until my eighth month. After a difficult delivery, my OB-GYN advised me not to have any more kids. I listened,
posted by Altomentis at 11:20 PM on November 5, 2019 [7 favorites]
Hyperemesis gravidarum is what killed Charlotte Brontë, among many other--uncountable--women whose names did not outlive them.
posted by jokeefe at 7:01 PM on November 6, 2019 [7 favorites]
posted by jokeefe at 7:01 PM on November 6, 2019 [7 favorites]
Something I'm not seeing mentioned here is how the pregnancy books and nurses and OB/GYNs repeatedly tell you that morning sickness won't hurt you and can't hurt the baby. Then they give you no metric for figuring out when morning sickness is actually hyperemesis. And THEN, a lot of doctors still claim hyperemesis can't hurt you but fail to add the disclaimer "if you receive appropriate treatment". Reading this article is the FIRST time I've heard the statistic that HG was the leading cause of maternal death before the 50s. Finding out Charlotte Bronte died of it horrified me, because what a painful, awful, terrible way to go.
I remember lying on my couch looking at the ceiling and desperately praying to a god I didn't believe in that if the torture would just stop, I'd go outside and I'd breathe the air (without the smells triggering a vomiting episode) and I would use my (weak and trembling) legs and be grateful for the health of my body. The second time I had HG, I was woken from a dead sleep at 2am to vomit over the balcony of my apartment because my roommate had decided 2am was a safe time to cook pork since I was asleep and wouldn't be able to smell it. That pregnancy ended in miscarriage and I do still wonder if not being able to eat or drink anything for weeks had something to do with it.
My two kids are the result of two back to back pregnancies in which I had morning sickness through the 3rd trimester but not HG. I was ten years older, I had a lot more research under my belt, and I had a metric for when to go the ER and request hydration. I didn't need it. I still wonder why. Is it because I was carrying boys, so there was less estrogen in my system? Is it because I was older and had a different hormonal makeup than my late-adolescent self? Was it eating low carb for years? All 3? Why is there no research on this?
posted by annathea at 7:30 AM on November 8, 2019 [4 favorites]
I remember lying on my couch looking at the ceiling and desperately praying to a god I didn't believe in that if the torture would just stop, I'd go outside and I'd breathe the air (without the smells triggering a vomiting episode) and I would use my (weak and trembling) legs and be grateful for the health of my body. The second time I had HG, I was woken from a dead sleep at 2am to vomit over the balcony of my apartment because my roommate had decided 2am was a safe time to cook pork since I was asleep and wouldn't be able to smell it. That pregnancy ended in miscarriage and I do still wonder if not being able to eat or drink anything for weeks had something to do with it.
My two kids are the result of two back to back pregnancies in which I had morning sickness through the 3rd trimester but not HG. I was ten years older, I had a lot more research under my belt, and I had a metric for when to go the ER and request hydration. I didn't need it. I still wonder why. Is it because I was carrying boys, so there was less estrogen in my system? Is it because I was older and had a different hormonal makeup than my late-adolescent self? Was it eating low carb for years? All 3? Why is there no research on this?
posted by annathea at 7:30 AM on November 8, 2019 [4 favorites]
annathe: I think even normal morning sickness is less severe if you are pregnant with a male. I think it is the hormones. I had bad morning sickness both times and it was markedly worse with my daughter. My mother wanted us girls to have babies and did not tell us half the stuff that’s miserable or possibly dangerous. Nor was she realistic about the potential for real pain. There was a point I had that talk with my daughter as part of the ‘don’t hurry too much about children.’ discussion. It’s work, it’s painful and it’s risky. To have a major issue like this not be well understood and well treated makes it worse. I feel bad for anyone who has this.
posted by Katjusa Roquette at 8:40 AM on November 8, 2019 [2 favorites]
posted by Katjusa Roquette at 8:40 AM on November 8, 2019 [2 favorites]
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