And Then the Nurse Called Me Fat

(This post was originally published 8/29/2012. After a recent conversation with a friend, I was reminded how despite incredible progress, too few people – including physicians – recognize and understand hyperemisis gravidarum.)

A couple days ago I saw this status update on the HER Foundation Facebook page:

“We have an HG sufferer in Jamaica in dire need of help, she is not receiving adequate medical care… telling her it is in her head and to just eat. She says she can’t take it much longer, so please if you know a doctor, nurse or survivor in the area please let us know!”

I sat stunned for a few moments. I wasn’t sure what to do. I wanted to scream. I wanted to cry. I wanted to fly to Jamaica and hold her hand and tell her it was not in her head. I wanted her doctors to never practice medicine again. I wanted to go back to 2003 and tell my frightened, sick, twenty-five year old self to change doctors and never look back…

The first time I took a pregnancy test was a Friday morning during summer vacation from teaching. My sister-in-law was coming to visit, and I wanted to know the result before she got there because I knew she’d be one of the first people we would tell. It was negative and I sat on the end of my bed and cried. Then I let it go. It was month one. This was normal.

We spent the day in DC, meeting my husband for dinner, walking past the White House, enjoying the gorgeous night. I felt queasy after dinner and blamed the charcoal grilled burger for the stomachache that didn’t seem to want to pass. The weekend ended, my sister-in-law left, my stomachache continued, and Monday morning arrived. And then for some reason, I took another pregnancy test.

It was positive.

That night we ate hot dogs and french fries to celebrate and I got sick. Very, very sick. The next night we ate spaghetti, and again I got sick. By the weekend we had cancelled our anniversary trip to New Orleans because I was too sick to travel. One week into my pregnancy I had lost 9.5 pounds.

We blamed it on whatever they put in hot dogs, we blamed it on the acid in the tomato sauce, we blamed it on a stomach bug. We blamed it on everything we could think of because my OB/GYN wasn’t doing anything to help. My family doctor ruled out everything she could think of. And yet the sickness continued and I was now only able to keep down water.

I called my obstetrician’s office in desperation, asking what I could do.  I was scared for my pregnancy. Could it really okay to be this violently ill? I felt like my body was turning inside out. I couldn’t imagine a tiny collection of cells clinging to tissue and riding out the storm. And didn’t I need to digest food to live and support a growing life?

The secretary put me on hold for what seemed like forever and then turned me over to a woman named Phyllis whose voice will forever be in my head. I can picture her nine years later. Phyllis the Nurse Practitioner. I shared my concerns, the phone pressed to my ear, my body lying on the floor, begging the earth to stop moving for just a moment so I could find some peace. Just a moment of peace.

And that is when she said the words, “I’m looking at your chart and I can see that you have plenty of poundage. You don’t need to be worried about the weight loss.”

Poundage. Plenty of poundage. This is where I want to post pictures of me to prove that I was not morbidly obese, but instead was a typical twenty-five year old who had gained fifteen pounds or so in the first years of her marriage while enjoying life. I was about twenty-five pounds overweight. But even in telling you that I’m afraid I am also telling you this – that it is okay to dismiss the concerns of a sick woman because she has plenty of poundage. And that is not okay. So excuse me, but fuck what I weighed. I was sick. I was horribly, terrifyingly sick.

And it didn’t stop.

On good days I made it to work. Those days began with my husband bringing me water and something bland, often half a piece of Giant grocery store pound cake, because if I could get that down before I sat up, I stood a chance. If I had the energy, I showered. If I didn’t have the energy, my husband helped me. Just washing my hair was enough to require more rest before trying to put on make-up. After regaining the energy that bathing had depleted, I would sit in the bathroom and put on my make-up, then drive in the darkness to the school where I taught.

At first I tried to hide that I was pregnant…and sick. Seeing an obvious change in my appearance and not knowing what to say, co-workers would either look away or compliment me on my weight loss. At the point when most women are unable to button their jeans anymore, I was digging through old clothes for my skinny work pants, which still hung from my hips.

After surviving my day, taking the elevator to get from one floor of the school to the other, sitting next to an overhead projector to teach, I would go home and crawl in bed knowing that when my husband arrived later he would wake me up and help me eat white rice and drink some water. You know, so I wouldn’t die. That was the plan, the best we could do. My doctor dismissed my sickness as normal, and so there would be no bedrest, no time off from work. I had to keep trying my best to survive.

By the time I was done losing weight, I was down 30 pounds. My ribs stuck out. There was a cavity under them where I could stick my hand, nestle it in between my suddenly visible skeleton and the growing bump of my baby.

Thirty pounds. I am 5′ 3″ and there was a child inside of me. And I had lost thirty pounds.

So the bad days. On those horrible days, I couldn’t work. I couldn’t get dressed. I couldn’t get out of bed. I couldn’t function at all.

Standing up made me vomit. White rice made me vomit. Water made me vomit. Breathing made me vomit. It would go on for so long that the OB, still in complete denial, would give up and send me to the emergency room, my new home away from home, and I’d get my nearly weekly dose of fluids and the elixir of the gods, IV Zofran. Because no one seemed to understand why an otherwise healthy pregnant woman was wasting away, each visit to the ER would bring a new round of blood work. My arms looked like those of a seasoned IV drug user, and my veins had all but quit on me. One poor phlebotomy intern had to leave the room, unable to stomach what needed to be done to get just a little more blood for just one more test. Nurses would say things like, “Awww, first pregnancy? Poor thing.” And I wanted to knock them to the floor but only had enough energy to say, “Yes, first one.”

They checked my thyroid, my blood sugar, sent me to a GI doctor who warned that my kidneys would potentially be sustaining permanent damage from malnutrition and dehydration. He mentioned my liver. I tuned him out.

On Fridays I would try a new food to see if maybe I could digest it. New Food Friday. New Food Friday sent me to the hospital more than once, but at the very least ended with me in the bathroom for several hours, bowl in hand, sometimes thinking that this was no longer worth it. That it all just needed to end. Sometimes I prayed for it to all just end, my face pressed to the cool floor, lying naked so I could alternate between the toilet and the shower easily, my entire body shaking from pain.

The doctors told me to keep trying. Just eat. Just keep trying to eat.

I took Reglan and Phenergan and B12 and occasionally a little blue pill called Bentyl that gave me auditory hallucinations but stopped the spasms that would last for several hours and leave my body completely empty. I didn’t know until I gave birth that the pain of your entire GI system revolting against you is worse than labor. I know now.

Throughout my entire pregnancy my doctors alternated between dumbfounded and dismissive. They occasionally discussed the idea of inserting a PIC line in my chest to give my body more nutrition, and then they would change their minds again. After all, by the third trimester I was able to keep down cheese and bread and pretzels and the occasional Flintstones vitamin. Surely I was fine.

Except that when you are 32 weeks pregnant, malnourished, and dehydrated, you aren’t fine. In fact, you are the opposite of fine. You are terribly ill, and when you are terribly ill and your doctors fail you, bad things happen.  So at 31 weeks when I knew something was wrong and called my completely inadequate doctor, I was dismissed once again. And 5 days later I gave birth to a 32 weeker who spent the first three weeks of her life in the hospital, unable to remember to breathe, unable to hold her body temperature, unable to eat without a feeding tube.

When the nurses weighed me upon my arrival to the maternity ward that day, I weighed 12 pounds less than I did on that Friday the summer before, the first day I took a pregnancy test.  I gave birth, I went home, I pulled out my skinny jeans, and I began my daily commute to the NICU.

Hyperemisis Gravidarum – HG is a debilitating and potentially life-threatening pregnancy disease marked by rapid weight loss, malnutrition, and dehydration due to unrelenting nausea and/or vomiting with potential adverse consequences for the newborn(s). HelpHer.org

No one should ever feel like they are not being heard when they are reaching out to the doctors in charge of their care. No one should suffer and be dismissed as weak, crazy, dramatic, unlucky. HG is real and it is devastating. In the months following my daughter’s birth, I scoured the internet trying to find answers. While the geneticists and neonatologists put my tiny baby through rounds of testing looking for answers, I found them on sites like the March of Dimes. She arrived early because she had to. She arrived early because her mother was horribly ill.

I was fortunate enough to find a new practice with a doctor who sat in silence when he heard my story, tears in his eyes at what the first practice had put all of us through. He looked me in the eye and in ink wrote across my chart in capital letters “HIGH RISK.” And he talked to me about HG. He understood. Yes, I suffered again with my son. This time they gave me Zofran throughout the pregnancy, not just in those beautiful moments in the ER, and sometimes it helped. There were also weeks and weeks of bedrest, family helping with my two year old daughter. I lost twenty pounds before the scale began to go the other direction, pushed on by the boy growing inside me. At 32 weeks he tried to come, but this new doctor stopped him. More bedrest. More sickness. And then at 38 weeks, he was here. Full term. That morning before I went into labor, I weighed myself. I weighed exactly what I had weighed the day of my pregnancy test with him. Somehow breaking even was a triumph.

This is hyperemisis gravidarum, and this story has to be told. For me. For my kids. For my incredible family who stood by me. For my husband who at twenty-five had to go from a newlywed to learning to care for a seemingly dying woman. For the kids I will  never have because my body could not take this illness one more time.

And for that woman in Jamaica who I am praying has found the support that she needs to survive.

 

Written by: Amy

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132 Comments

  • Thank you for sharing your story Amy. I’ve never heard of HG but it’s a true miracle that you made it through all that.

    • “I’ve never heard of HG” is something I have heard scores of times the last 24 hours. And sadly, I’m hearing it from healthcare providers. There is so much work to do!

  • anne

    wow amazing. a stunning story. i dont understand how stupid these doctors are, did they even apologize or just run the other way when they saw you coming?

    • They never apologized. I read the chart that the OB filled out after my early delivery, and she characterized my condition as having been “resolved” therefore not contributing to the early delivery. It was resolved by me giving birth and my body no longer trying to kill itself because of the hormones coursing through my veins. Needless to say, the so highly recommended practice fell apart shortly after that…

  • It makes me furious that in our great country that women have to deal with this level of incompetence from the medical community. I know not everyone is this way, but the fact that you and your daughter were put at such risk is maddening.

    I am so sorry for what you went through during your first pregnancy. No one should have to suffer that way.

    I hope the woman in Jamaica finds the help she needs.

    Thank you for sharing your story.

    • Our country does not do maternal-fetal medicine well, especially when compared to other developed countries. Check out this quote from a recent report: “Preterm birth rates are higher in the United States than in 130 other countries, including many poorer nations, according to a new report from the March of Dimes Foundation, the World Health Organization, and other leading health agencies.

      The report, which provides the first-ever estimates of preterm birth rates by country, ranks the U.S. 131st out of 184 countries — ranking between the Congo and Nigeria — with a preterm birth rate of 12.0 per 100 live births.”

      Completely unacceptable. And highly unlikely that this would be the case if men were pregnant…

  • Thank you for sharing this important message. I’ve never seen anything written on this, but suffered 5 months with so much nausea that I was finally put on Zofran myself.

  • ((hugs)) Amy I am so sorry you had to go through that. There is as much difference between “morning sickness” and HG as there is between eye twitch and seizure. It’s insane that you doctors were so dismissive and cavalier…it’s criminal actually. With my second I had incredible morning sickness and lost nearly ten pounds the first trimester. Thankfully my midwife was right on top of it and helped me out a lot and we were able to get things turned around quickly. I’m so glad you found a good care provider who treated you correctly. I wish more women were willing to fire a bad doctor and search for the good ones.

    • As women we get used to being told that things are “in our heads.” It was said to me so often by people with years of education and training that I completely lost the ability to do anything but believe them.

      • I understand completely. This is the reason, I think, that 75% of my childbirth education class students are SECOND TIME mothers. I’ve had women break down in my classed literally crying saying, “I wish someone had told me that last time” or “I KNEW I wasn’t crazy! I KNEW that had to be true because that’s how I felt!”. It’s tragic. Utterly and maddeningly tragic.

  • I cried while reading this, but sobbed when I came to this line: “For the kids I will never have because my body could not take this illness one more time.”

    My God, sweetheart.

  • This is horrendous. I was incredibly sick with my daughter (not HG, just really, really sick) and my practice was constantly vigilant about it. I’m so sorry you had to go through that.

  • Amy, I had no idea you were an HG survivor. I am so glad you’re connected to the HER Foundation. I love them and have done a couple of things with them with the UN Foundation’s Million Moms Challenge. They are smart and compassionate and most importantly, doing things to change the level of knowledge on this disease. I want to thank you for your boldness and stunning, raw writing that shares your journey. I KNOW it will bless others in a truly powerful way. I grieve with you for what might have been and share in your joy of the two amazing kids you got. Plus one truly awesome husband! Bravo Team Lupold Bair!!!

    • I am so happy that you know about HER! I feel like this is one of those things that no one ever talks about, like we discussed with pelvic floor complications, specifically fistula. These organizations all work together to shine a light on the sadly atrocious state of maternal-fetal health in much of the world.

  • Wow, Amy. What a chilling ordeal you went through. Thank you for sharing your story.

  • Amy! I just want to hug you! I am so sorry you had to deal with HG! I’ll send prayers for the Jamaican woman who is suffering.

    Is HG hereditary? What causes it? (I am off to Google.)

    • Unfortunately, they’re still figuring all of this out. My mom had fairly easy pregnancies, but from what I can tell, it sounds like the women in my dad’s family suffered more. My grandmother died when my daughter was a toddler and my aunt passed away when I was a child, so I never had the chance to ask for specifics. There is research that points to HG being an auto-immune related illness. There is still so much to learn, though.

      • Well, I am so glad you found another (MUCH BETTER) doctor!

        I read a little about HG. I will read some more after I put my kids in bed tonight.

        Such a scary thing, though.

  • Christine W

    Thanks for sharing Amy…I knew your daughter was a premie but I didn’t know the full story. Doctor’s are not God and women need to hear stories like yours so they will listen to their own bodies and seek other opinions when things don’t seem right. I wish I would have done that when I was younger.

    • I wish every day that I had believed what my body was telling me as well. There is so much that we don’t know about how our bodies work, even in 2012, even with highly trained doctors. Hopefully more women will be empowered to advocate for themselves in ways that I was not able to do!

  • Wendy

    WOW. I have never heard of HG. How awful you (and your family) had to endure such a terrible experience and horrible treatment. Thank goodness the kidlets are okay, geesh. I would have been freaking out too. And that nurse? wtf is right. I don’t even know what to say about that…so wrong on so many levels. Having been thru something where doctors dismissed my symptoms from migraines, which turned out to be…oh you know, just blood clots in the brain. Moral of the story: You have to be your own advocate! and trust your instinct. Going to another practice is the best thing you did, because you knew. You knew all along. Thanks for sharing Amy.

    • I would love for someone to do some research about why doctors dismiss people who are clearly suffering. At what point did the medical community become so cynical that they stopped believing people are really ill?

  • I’d never heard of HG before reading this post. I am so angry for what you had to go through. You and your daughter could have died, and your doctors completely failed you. I don’t understand how doctors in the U.S. can be so completely incompetent. MY SIL almost died from pre-eclampsia, having swollen by probably 20+ pounds of water and left to labor for 4 days (with extremely high blood pressure) because it was 4th of July weekend.

    There is no excuse for what happened to you. I can’t believe we still have so far to go for all women to have proper maternity care in our supposedly civilized nation. I hope the woman in Jamaica finds the care and support she needs to have a healthy remainder of her pregnancy.

  • Jane

    I will pray, this becomes common knowledge. Knowledge is power.

  • I just cannot imagine that nightmare and then to be surrounded by medical “professionals” who most certainly should have known better is awful. I am so sorry you had to suffer through this Amy, and I do think the mental toll must have been so incredibly trying. Obviously, the physical toll was awful as well.

  • Kelly from Kelly's Lucky You

    I’m so sorry that you and your family had to suffer – immensely and needlessly.

    My frustration grows and grows at the lack of concern for the safety of children in this world – as they develop, before and after birth. We should value and protect them. Instead they are placed at terrible risk. The path to creating families should be smoothed, not fraught with roadblocks at every turn.

    I’m thankful that you and your children survived and that you are willing to share your story so others can benefit. You’re a rockstar, Amy Lupold Bair, for how you handle what life throws at you. (((HUG)))

    • Thank you for that, Kelly, but I can assure you that it has taken far more breakdowns than I would like to admit to get to the point where I can write a post like this. And even in writing it, I can see how what happened to me then still affects me now, how not being taken seriously or being believed in other areas still hits the nerve from my interactions with those doctors. I can only hope that by the time my daughter becomes a mom, the state of healthcare in this country will have radically changed.

  • OMG Amy, I had no idea! It is a testament to your strength that you went in the second time, that time knowing what you faced. Thank you for sharing this, I’d never heard of it before.

    • Well, I believe Einstein would say that it shows my insanity that I would do the same thing again and expect a different result 😉 The thing about HG is that you don’t always have it with every pregnancy, and the thing about a healthy toddler is that they make you want another one. I’m not sure it was the right decision to make, but I thank God for the incredible blessing that is my son. I cannot begin to imagine my life without the light and love he brings to all of us, including to his sister who suffered with us so he could be here.

  • Hearing your story makes me so glad to know you and so glad that you’re still with us to tell this story. I wish I could’ve known you then to help you through all of it. No woman should ever have to hear that something is in her head just because those in charge are too ignorant to help. I had never heard of HG before your post. I am so glad that you’re sharing your story and being a voice for other women both in our country and others.

    • I’m so glad you’ve heard of it now so I can make you help me spread the word! I’m glad we know each other now, too, and I know that had we known each other then, you would have found fun and creative ways to prepare my rice 🙂

  • Oh my goodness…when I was throwing up 5 times a day with my pregnancy and they wanted to send me to the ER, I begged them to give me anything to help–I hadn’t even told my boss I was pregnant yet–which was easy enough since I worked from home and could crawl easily enough to the bathroom whenever I had to vomit again. My docs prescribed zofran, the same cancer drug that helped my father stop from vomiting when he was going through chemo, and it literally saved my life. How can responsible doctors not offer this to every woman who is impacted this way by pregnancy??? And thank you for sharing the medical term–no one bothered to give me the diagnosis when I was that ill. So glad you got the help you needed with your next baby.

    • There was a class action suit that has now made it easier for everyone who needs Zofran to get it. Hopefully this, and more education, will make it easier for women to get the care they need.

  • what makes doctors and nurses think it’s ok to add insult to injury when patients are hurting and in need. this isn’t the first time I’ve heard something like this. So sorry you had to deal with this.

  • Dang, Amy!! I can’t believe those Dr’s.

    And thank you for telling your story. I have heard of HG, but never knew someone who had it, or realized the symptoms and pain were so terrible!

    • I think there is so much to still learn about HG that it is one of those things that most doctors don’t even understand. I was very lucky to find doctors who did understand for my pregnancy with Noah. It made all the difference!

  • Holy. Wow. I have never heard of HG but will share your story now. It makes me angry that it wasn’t diagnosed for you the first time and am so incredibly amazed by your strength in choosing to endure it again. xox

  • Caitlin

    I feel so bad you went through all this! I am on my third pregnancy and had no issue gaining weight with my first 2 (girls) but with the third (a boy) I lost 13 lbs during the first couple of months. I was told not to worry because I could lose 30 lbs and would still be fine! What? I am 5’9 and started out at just under 140 (135-140 depending on the day). This made no since to me that it was ok for me to get down to just over a hundred pounds at my height! The dr offered me Zofran and I was happy to be able to take it! I still got sick on occasion even on the meds but not as horribly as it was without it! I have now gained plenty of weight and only need Zofran occasionally now!

    Praying that no one else has to suffer like you!

    • It infuriates me when healthcare providers say that it is okay to be malnourished because you are not underweight. I am so happy that you have been able to get the nutrition that you need and that they are providing you with the medicine to make that easier.

  • Wow! I’ve not heard of HG but I think perhaps my DIL suffered from it. Your littles are precious gifts Amy.

  • Amy, I am so sorry you had to endure HG and my heart goes out to you when it comes to the lack of compassion and understanding you received from the medical community. Unfortunately, this is not uncommon and the HER (Hyperemesis Education & Research) Foundation continues to battle for HG women across the globe. We will not stop until we have answers to why HG happens and what can be done. HG changes lives, it lasts more than 9 months, the impact lasts a lifetime. I could go on and on, as my passion in life has become helping HG moms, and why we founded the HER Foundation 9 years ago. We are still in contact with our HG sister in Jamaica and are working with her to ensure better care. Thanks for sharing your story Amy! Thanks to Million Mom’s and Chrysula for being an advocate of awareness for HG women around the globe! Ann Marie, Co-Founder HER Foundation

  • Janice

    It’s terrible what you went through and absolutely awful that those doctors dismissed you and forced you to suffer even more. I am glad your daughter and YOU are OK.

    However, and please, please don’t take this the wrong way – but why did you choose to have a second child and go through it all again – such a risk!!?

    • Great question! There are a few parts to that answer. The first is that the original decision was that we would not do it all again. I remember standing on the elevator at the Children’s Hospital after a day of testing on my infant and looking at my husband and saying tearfully, “We can’t do this again.” It broke my heart because I so desperately wanted more children. But then once I learned what this horrible condition is called, what may or may not cause it, and how it can be treated, I had a little hope. There is something about a diagnosis that makes having something easier. There is something magical about being told that you aren’t crazy. That is hard to explain, but that relief I felt planted a seed, and that hope was a powerful thing. The next part to the answer is that I found a team of doctors who I trusted, and trusting doctors again was a huge thing for me. You have to understand that I received essentially no care above and beyond the standard pre-natal care that any pregnant woman receives. Knowing that I would have doctors taking different steps the second time was comforting. Also, there is no way to know if a woman who suffers from HG will again. There was a solid chance that I could have a healthy pregnancy, and once you’ve suffered through the horrors we faced at a time in your life that should be beautiful and exciting, you want a second chance. You want the pregnancy and delivery you have always dreamed about it. You want it desperately. I wanted to hold my baby after giving birth. I wanted to breastfeed. And then finally, I loved and enjoyed my daughter so immensely that the idea of having another her, another person created by my husband and I, a sibling with many of the same idiosyncracies to share all of the same experiences, was too powerful to ignore. I hope that answers your question!

  • What a horrible story! I have a friend who had to terminate her first pregnancy because she was in kidney failure from HG. She did a ton of research, changed doctors and was able to try again. She had a daughter but the toll it took on her body was horrible and she was told not to try again. She still suffers from the effects of that pregnancy – 14 years later. It stuns me that a physician could not look and you and see how desperately ill you were.

    • I will never understand why my physicians didn’t care for me adequately or believe me. Surely they knew how sick I was, but maybe because they didn’t know what to do, they chose to do nothing? It defies logic, and I have written letters to those doctors in my head many times. Maybe someday I will have the courage to ask them. Or the even greater courage to just let it go. And yes, the effects have a sneaky way of popping up later. At one point I apparently tore my quad, but I only know it because of the “dent” on the top of my thigh. It is amazing what happens to a malnourished body being pushed to its limits.

  • I could have written this post. Unfortunately, my first pregnancy ended at 19.5 weeks with me in labor being emotionally and medically neglected on a gurney in Vegas on what would have been my wedding day. Three years later, my husband and I found an AMAZING OBGYN in White Plains named Dr. Shaw who held my hand and guided us through the murky stressful waters of HG and a Cerclage. So many people think that I was exaggerating. So many people thought that I was just being dramatic…

    • Kristina, I am so sorry that you also suffered with HG and that your first pregnancy ended so horribly. It is amazing what a difference it makes to have well-informed, educated, compassionate medical care. My hope is that people will believe that we are not exaggerating and being dramatic without having to experience it themselves to reach that level of understanding. Thank you for reading and for sharing.

  • thanks for sharing your story – it’s so very powerful and I hope lots of people searching for answers read it & know that there’s hope.

  • Great post. It’s hard to believe that a person could lose so much weight during pregnancy that there is no weight gain shown at delivery. That’s the beast of HG. It sucks the life right out of many women. Thank God for making it through and for being able to tell the story. I make sure to tell my HG story everywhere I go and to anyone with ears. It’s real and it’s awful. The worst experience of course is with doctors who don’t know the first thing about it. We must continue to educate!

  • Cindy Brooks

    Thank you for telling your story. This needs to be shared again and again! With my second pregnancy I became horribly sick and lost 11 pounds in 3 weeks. My OB sent me to a GI specialist who quickly determined I had developed a lactose intolerance. No patient should ever be treated with indifference the way you were!

  • Wow! Thanks for sharing your story. I am 10 weeks (tomorrow) pregnant and have been dealing with a lot of nausea and the like. I am so thankful that it’s not THAT bad. I have heard of other people in your position, and I just can’t believe that your doctors didn’t help. I know from experience that sometimes you learn more about yourself and how to stand up for yourself when you go through a bad experience like this. You are a strong woman, and your lesson will help teach others.

    • Sarah, congrats on your pregnancy! I hope that your nausea turns out to be standard fare and that it passes quickly as you approach that exciting second trimester. Enjoy! 🙂

  • I have never heard of HG before, and am just astonished at the level of unconcern medical professionals had for both you and your unborn child.

    Weight has nothing to do with nourishment, you can be obese and still be malnourished, and I don’t even need a medical degree to know that.

    • I wish that doctors had to listen to this, “Weight has nothing to do with nourishment,” over and over and over again and were not allowed to receive an M.D. until they really believed it. I think that as a country we’ve finally realized that often obese and malnourished go hand in hand, but somehow we still think that losing weight due to sickness is less dangerous for people who start out with a few extra pounds. It’s maddening.

  • Mackenzie

    Amy, as a doc who takes care of pregnant women, I am so sorry! Your doctors went to a different school than I did, because when I had HG with my first, I knew exactly what it was! This can be very serious and if ever you feel your doctor is not listening to you, find a new one!

    • Unfortunately, I saw two OB/GYNS, a nurse practitioner, two family practice docs, and a parade of emergency room physicians. No one diagnosed me with HG. They all said that I should “hang in there” after exhaustively searching everything else they could think of from thyroid levels to UTI’s. You hear “It’s nothing” from enough doctors and you begin to think it must all be in your head. I think that the comments from other HG sufferers saying the same thing show that this is all too common. The doctors listen. They just respond horribly, horribly wrong.

      As for your response regarding HG – “This can be very serious” – I believe that my post illustrates that I am already keenly aware of that, thank you.

  • So chances are you’re one of the very few who understand why I tried to end my life when I was seven months pregnant with my first HG pregnancy.
    But don’t worry, I was chubby too, so it wasn’t that big of deal.
    *sigh*
    Thank you for telling your story.

  • Ugh! This is heartbreaking and so infuriating. I’m so sorry you had to go through all that and that ANYONE would be dismissed in such a condition.

    • Thank you, Jill. Unfortunately, the last 24 hours have shown me that sick women being told that their sickness is in their heads is still incredibly common. Hopefully as more people speak up this will begin to change.

  • Wow … I had never heard of HG before this post. Sounds scary – I am glad you are now okay.

  • Amy- how did I not know you are a fellow HGer??

    As an HG sufferer {and a woman} this infuriates me.

    I was “lucky” to be diagnosed right away- at 7 weeks. Spent 8 weeks in the hospital and 12 weeks at home with a nurse that came by to check my PICC line and bring my TPN. I vomited 5 to 15x a day for 30+ weeks.

    Reglan, Tigan, Phenergan… They didn’t offer me Zofran, as it was just starting to be used for pregnancy.

    I was 26 years year old and scared out of my mind.

    When they couldn’t find any veins in my arms, they took blood from veins in my feet. PICC lines broke regularly. Once, it was so bad, they had to insert it surgically. That same night in the hospital, I called in the nurse after throwing up dark red chunks… she looked at me and said, “Oh sweetie. That’s tissue from your esophagus.”

    I had ZERO connection to my unborn baby. I just wanted to sleep and in the darkest, quietest room possible. I told my husband if I left after the baby was born, I would eventually come back. Fortunately, I delivered a healthy 8 lb 10 oz baby and with him, the HG.

    It was the absolute worst experience of my life- and that was with excellent medical care and a supportive family. I can’t IMAGINE what it is like for women all over the world who face this monster alone.

    We NEED to get the word out so people understand. HG is MORE than, “being sick”. We need to use our social media contacts to help HER with their research {they use samples form both HG and non-HG mothers}.

    The problem is that it cures itself with delivery {or termination. MANY wanted pregnancies are terminated because the HG is just so bad}, and it doesn’t effect men…

    So, let’s do this. Everyone should know what HG is. Not just a two sentence line in a pregnancy book…

    • Tiffany, thank you for sharing your story and for helping me to share mine. There are still doctors who don’t believe this is a condition, just a way to describe excessive vomiting. I would love to help get more moms involved in the HER study (working on my piece of that now and have spoken with other HG friends who are participating) and also find ways to educate the medical community. I am blown away by the response to this post. More needs to be done. I agree…this cannot be the end of the discussion.

  • Teronya Holmes

    Thank you for sharing your story…HG survivor here, and so are my two amazing sons (ages 9 and 4). Yes, I went through it twice. It’s a story I hope to write about one day, too, but even now, 10 and 5 years later, I still have a difficult time allowing myself to “go there”. One day, the story will come, and your post has inspired me to move past the dread of “dredging up” all of those memories and feelings …until then, I am so appreciative of women like you who tell it, and offer hope to other women, and their loved ones, going through it. I will continue to pray for the young woman suffering from HG in Jamaica, and others like her. Again, thank you, and God bless. – Tron

    • Thank you for reading and for sharing that you have experienced the hell that is HG as well. I’ve been blogging for four years and while I feel like I alluded to being “sick” or having “rough pregnancies” many times, it wasn’t until I saw that Facebook update about the woman in Jamaica that I felt like I just had to write my story. This was a post that was difficult to start writing…and then difficult to stop. As I’m sure you know, two pregnancies of suffering through HG creates a book’s worth of material, not just one post. Hopefully just this little window into what HG is and what it does is enough to get the ball rolling in helping more people become aware of it.

  • I found you by following a link on fb. I am a doula and I’ve never heard of this condition. But based on your description, I’ve known a few women who’ve had HG.

    Thank God, you and your daughter survived.

  • My good friend had this and her story is similar of course. When I became a doula she PLEADED with me that if I did nothing else, please help her spread the word about this. I am going to send people from both my blogs here today. You told this story as it needs to be told. So glad you (and she) are well and raising healthy, fighter babies.

  • Dani

    Amy,
    I am so sorry!I’m crying as I type this. I do understand. I was hospitalized with my first son with Hyperemisis. I felt much the same and couldn’t keep anything down…for 20 weeks. They told me to eat anything…candy/cookies with my 2nd pregnancy. I am thankful it ended. I so wish that had been the case for you. I too lost weight and no one was concerned. I will spread the news. I didn’t realize the severity of this diagnosis even though I had a much milder form than you.
    God Bless!

    • Dani, the GI doctor said if you can keep down a plain hamburger from mcdonald’s – no cheese, no veggies, no ketchup – do it and get it every day if you have to. If you can keep down a milkshake, even better. It didn’t dawn on them that rather than continue to taunt my insides they should provide me with the nutrition my daughter and I needed. I am so sad to hear that yet another person was told to just eat anything as if candy provides even an ounce of nutrition! Thank you for reading and thank you for commenting.

  • Ame–
    As a pal who watched you walk through your second pregnancy–and as a friend who was also worried and scared for you–I applaud you for sharing this post. I know it couldn’t have been easy to write, with the memories it conjures, but simply from the responses here you should see how much it is appreciated. The more it’s shared, the more medical professionals will know about it. Yay for you! And YAY for two healthy, happy, awesome kids! And YAY for getting the word out!

    • Amy, I could not have gotten through that second pregnancy had it not been for you, Lisa, the MOMS Club, our little girls playing together, “Pap” hanging in there with me. Not feeling isolated and honestly, insane, the second time around saved me. I will always be so thankful for all of you for that.

  • Roberta

    I am utterly shocked that an OB let you go on like this. Just by being pregnant and having lots of pregnant friends over the last 5 years, I’ve heard of it. I’ve known more than one person with HG, and I CAN’T EVEN IMAGINE. They got Zofran immediately from their doctors, and suffered for the full 9 months of all pregnancies, enduring bedrest, IVs, the whole shebang. I am dumbfounded that anyone professionally connected to pregnancy or birth hasn’t heard of this condition, or would not diagnose or treat it properly, endangering women and babies. I’m so sorry for your experience that first time.

    • I think that some people view HG as just one end of the sick-during-pregnancy spectrum, hyperemisis as a description of throwing up frequently, not as a debilitating condition. I hope we can all change that misconception!

  • I feel like I had this with my second child but was never diagnosed. I couldn’t get out of bed. I had to hire a full time babysitter and I felt like she judged me the entire time as some lazy parent who just wanted to sleep / lounge around in bed.

    I had Zofran, holistic stuff to put on my pulse points and pretty much everything known to help with morning sickness although nothing helped. I might have even just chewed on a ginger root. Not one thing helped except birthing that baby.

    I lost 40 pounds during my pregnancy and my daughter was born three weeks early at 5 pounds. I was so depressed during that that I honestly cried for days when I got pregnant with child #3 for fear that the same thing would happen. Thankfully it didn’t.

    Thanks for sharing and helping me put a name to my entire second pregnancy.

    • Stacie, thank you for saying this: “I was so depressed during that that I honestly cried for days when I got pregnant with child #3 for fear that the same thing would happen.” A couple other people have commented here about the depression and the thoughts of suicide, and someone shared on Facebook that she contemplated taking her own life. I glossed over that in my post, the feeling at times that I just wanted to end it all, but that feeling was there. And the depression was real. To feel like you are dying, to feel that at what should be the happiest time at your life, and to feel that no one understands – in fact, that they judge – is devastating. Thank you for reading, thank you for commenting, and thank you for pushing me to say again how emotionally devastating this condition is.

  • I did this 5 times in 9 years. I found some relief here and there with Phenergan. I had heard of Zofran, but my doctors would not prescribe.

    • We did Reglan and Phenergan as well. They seemed to make my skin crawl more than they helped, though. I’m curious why your doctor would not prescribe Zofran. Were you diagnosed with HG and losing 5% or more of your body weight?

      • Clisty

        I lost about 10% with each pregnancy. My last baby was born 8 years ago, back in ’95 when I was pregnant for the first time, Zofran wasn’t around, and then thru the next pregnancies, my insurance wouldn’t cover it. They told me it was $75 a pill.
        As a result of all of that, I developed a bad habit of gorging myself when I felt ok, because I never knew what might stay down. Horrible eating habits, anything was fair game.

        • There was a class action lawsuit against the makers of Zofran around the time or shortly after the time of my second pregnancy. I only was able to get my insurance to pay for it with my second after I explained to them at length a.) the guilt they’d carry over the death of a baby and b.) the cost of my daughter’s premature birth. It turned out that saving my son and I was cost effective and so they approved three pills a day, one seven day supply at a time. I believe at that point it was $52 a pill. Horrific.

  • WOW…this story has tears running down my face as I read it! How horrible is it to have a doctor that you’re turning to for help basically dismiss this very real, very awful thing that is happening to you – when really you should be spending your time excited with anticipation of the arrival of your little bundle of joy. I will definitely be sharing this story so that it will hopefully help other women experiencing the same thing! Glad you and your children came through this!

  • Mandy

    You are an amazing woman! Thank you for sharing your story! I went through this as well with twins. My first dr said ” I wasn’t dying’, so after five months of feeling like I was, I was able to go to another dr and was treated accordingly. My heart goes to you and your family.
    Xx

    • I am so glad that you left. I felt like I needed to trust my doctors, my horrible, horrible doctors. And I felt like if they all said I was crazy, then maybe I was. The care of my doctors during my second pregnancy was nothing short of saintly compared to the first, and I am so happy for you and your twins that you made the decision to find a new doctor before you really were dying. Because women do from this, and so do their poor, innocent babies. Just horrible.

  • Every woman is enriched when we share our stories like this. Amy you will help so many people by letting them know they are not alone. I am sorry you suffered so, but grateful that you have the voice to make sure others don’t.

  • Allison

    I sometimes thought I really might be the crazy one! My first ob actually prescribed an anti-depressant b/c I was so “emotional” over the unrelenting rejection my body was suffering through. After I switched doctors I was introduced to the Zofran pump that I wore from 8 weeks until delivery for my subsequent 2 pregnancies. It would limit actual vomitting to only 2-3 times per day and would allow me to keep most foods down (not spicy or heavy cream). The extreme fatigue, dizziness, and nausea never relented until delivery. My third and final baby was born this January and I had to give up my pump for delivery. I vomitted with literally every push. My daughter will know how to advocate for herself if she is unlucky and inherits this from me.

    • The fact that you were physically ill and were given medication to treat a mental illness blows me away. I am so happy that you eventually were given a Zofran pump – a ZOFRAN PUMP!! Just thinking of that is amazing. And yes, I am with you on the nausea never stopping until after delivery. I threw up during my first delivery despite not even being allowed ice chips and also threw up through my entire c-section with my second. In the days following their births I felt like a new woman, like I was experiencing food for the first time. I hope that both of our daughters will be spared this condition, but yes, we must teach them how to advocate for themselves.

  • My empathy and sympathy – having gone through similar situations at 9 and then 15, it’s never fun having to wait as doctors practice medicine. At least mine were pretty good guy, but going from 3-9 complaining that I felt funny, and unable to explain what it was, and then finally finding what it was was a huge weight off my parents chest.

    We can forget the screw-ups at the X-ray techs. Blah.

    • I am sorry you had to experience the feeling of being both terribly ill and not believed, and I’m especially sad that this happened to you at such a young age. At some point we all forgot that humans are built with instincts, instincts that tell us that something is very, very wrong. I believe that doctors who work with patients and those intuitions have the best results.

      • Eh, I blame myself for not knowing how to describe blood poisoning from damaged kidney and not really working ureters.

        The best part was my parents being told I had kidney cancer … by the Xray tech. The doctor then told them I had an abnormally large kidney as it was doing the job for 2.

        • You blame yourself? Seriously? That’s ludicrous.

          A doctor once told me that lots of kidneys grow wrong. In fact, my son has one kidney that is abnormal, but functions fine. You would think that doctors are used to checking for kidney anomalies!

          • Of course not seriously! I still cannot describe that weird feeling, but do like to mess with my Mom and told her I felt funny a couple years ago and watched her get pale.

            Lucky for me, the doctor who actually invented the surgery was based at Children’s Hospital in Detroit and performed my surgery. And Xray techs suck.

          • Good Lord. And yes, any tech who gives a diagnosis of any kind sucks. That’s just so wrong.

  • Katie Kimes

    I as well had HG while pregnant with my first and so far only darling child. A little girl who will be 4 on new years eve. I found out I was pregnant in April of 2008 after 3 weeks of being sick, from what I thought was the flu. Little did I know that this was the beginning of 9 months of hell. I skipped my cycle but the doctors said it was probably from being sick. My husband bought a pregnancy test and I took it just to be sure. Positive! Yay! Went and seen an ob/gyn told him about the sickness but he blew it off. For the next 3 months I was glued to my toilet. My vomit was black and sticky like tar. Finally I walked into the emergency room at 20 weeks after working a 10 hour shift for a wholesale store. I thought I was dying. I was always taking days off work. Having people cover my shifts. I hated being pregnant. I had a bunch of blood work done along with a catscan. Found out I had serious gallstones and the extra bile was messing with my appendix. Surgery was probably going to happen. I was given antacids and an appointment with their Midwifes to go over my options. My ob/gyn faxed over my medical records to my new Midwifes office. She looked over them and then the letters HG came out of her mouth. These past 20 weeks finally had another name besides hell. I had to take it easy at work. No stairs at home, my husband didn’t even know what to do. I blamed him, lol! I wanted this to end. By August, my job had enough and had to let me go. I would lay on my bathroom floor for hours in pain from vomiting. My heath care provider would cover nausea medication. Too expensive for an unemployed me to buy too. I just dealt with it. By the middle of my second trimester I lost 40 pounds. My Midwife said if I lost one more pound she would admit to the hospital and I would be on an IV and feeding tube. I struggled for the next 10 weeks to not lose anymore weight. I was very over weight when my pregnancy started but by the end I was average. I lived off of microwave popcorn it was the only thing I could hold down. Every appointment I would step on the scale and I would weigh the same. Meaning as the baby growing I was still shrinking. I never had to buy maternity clothing. By Thanksgiving I just wanted it all to end. False labor atleast once a week, extreme swelling and I had found out I had group b strep. Still don’t really know what that is but it requires an IV of something that makes your body tingle during delivery so its not passed to your child. My due date was Dec 15, that came and went. The day after Christmas we were back at the office with false labor, again! December 30, 15 days late, I walk or wobble into the office so swollen and sore I didn’t have laces in my shoes. I was now diagnosed with toxemia. Induction was necessary. My immune system was not working from not enough nutrition and toxins were filling my body. I had several IVs and an epidural but finally I was relaxed. While pushing out my daughter I continued to vomit. But on new years eve 2008 at 5:34 am I delivered a healthy little girl who weighed 7pounds 9ounced and was perfect. I continued to be sick until just before my 6 week check-up. But now I’m paying for it. Once I could eat, I ate. Now I’m 310 pounds and can’t lose weight. And I’m terrified to get pregnant again because I wouldn’t wish that kind of sickness on my worst enemy. This is my story. If you know something is not right, get a second opinion. HG is serious and if left untreated could cause serious harm to yourself and/or your unborn child

    • Katie, thank you for sharing your story.

      And thank you, in particular, for saying this: ” Once I could eat, I ate. Now I’m 310 pounds and can’t lose weight.” It is so hard to explain to people why I struggle at times with moderation. With my first pregnancy I used to dream about someday being able to eat a cheese enchilada. By the time I was pregnant with Noah, I had given up on hoping to eat real food and resigned myself much more quickly to surviving on white rice, potato flakes, and microwave french fries. When you spend 16 months not eating – seriously, not eating – you suddenly have a very different, very unhealthy relationship with food. I think this is one of the effects of HG that people don’t talk about. I also gained an unhealthy amount of weight after my last pregnancy, and it wasn’t until five years later that I took it off with the help of my readers, my family and the online Mamavation community. But I know that I will likely never have a healthy relationship with food. Simply being able to digest food feels like such a blessing to me.

      • Katie Kimes

        Thank you! I had no idea it could even be worse than what I experienced. Morning sickness is normal but all the time sickness with excessive weight loss and tremors is not. I’m pretty sure if it wasn’t for the fact that I am overweight I probably would have delivered early. I hate that women have to suffer from this. I really want another baby and my cycle is currently 5 days late but I’m petrified that I will experience that again.

  • Thank you for sharing this touching and heartbreaking story. My dear friend suffers with HG in her pregnancies too. I had never heard of it until she told me about it and I saw how ill she was with her children in utero.Thanks for raising awareness!

  • Michelle

    I had HG with both my pregnancies… The first one was terrible, the not-knowing and trying every nausea med or vitamin that helped someone else… I was 125 when I got pregnant and barely 102 at 4 months along (I’m 5’9″).
    Nothing helped, even iv zofran administered in the outpatient clinic to me weekly with my fluids and liquid vitamins.

    The second pregnancy was equally miserable, this time I was on home health services so I would check my ketones daily and up the flow is my 24/7 iv fluids as needed. It was more convenient to have the iv at home, I had a pump with a stick site I changed out daily to administer zofran… And it was still horrible. – the pregnancy was more difficult because I had a one year old daughter I was physically incapable of taking care of.

    I read somewhere that almost a quarter HG sufferers terminate the pregnancy for health reasons… And the idea it could be looked over, that doctors let it go undisguised – something SO terrible that women terminate their pregnancies- is just deeply saddening.

    My doctor and I decided I should have my tubes tied as a precautionary measure- we did not think it was physically possible to survive another pregnancy. I was 25 years old and wanted seven children… But it took us all of two minutes to agree on the tubal ligation.

    I can totally relate to thinking “it wasn’t so bad” after the first one was a toddler… Then the slap in the face when it happened again.

    Thanks for sharing your story, I haven’t ever found any support groups or even many blogs relating to HG. Feels good to know I wasnt alone!

    • Michelle, thank you for sharing your story as well! Have you checked out HelpHer.org? I’m going to be participating in one of their studies. Hopefully if they can learn more about why HG happens, they can learn more about how to treat or even stop it.

  • Omg Amy…. my sister is pregnant and high risk. She is overweight and was sick for first part of pregnancy I was worried she was losing weight but she got better I believe now. I couldnt imagine what you and your family was going through and now what this woman in Jamaica is going through. Sending love to you for opening eyes to others about HG and starting this conversation. Hugs

  • Amy, I had never heard of HG before. I cannot even imagine how you must have felt. And the fact that you made it through TWO pregnancies is a testament to what a strong woman you are. I hope that others who are suffering will read your post and know what this condition is. You are such a wonderful role mommy and you resourcefulness probably saved your life and that of your children.

  • Oh my goodness. I have never heard of HG. I am so sorry you had to experience that with your pregnancies. Thank goodness you found a Dr. who could help you with your 2nd pregnancy. Hopefully this post will help someone out there who is going thru this to find a Dr. that can help. I will be sharing your amazing story with other women in hopes that this message gets out there to the women who need it.

  • My heart is broken after reading your story. I can’t imagine how frustrated and hopeless you had to feel as they continually dismissed your health issues and concerns for your unborn baby. I hope the woman in Jamaica can find an understanding doctor like you did for your second pregnancy.

  • […] the story that sticks out the most is from my friend Amy, who wrote about her experience with Hyperemesis Gravidarum (HG) and I cannot imagine a pregnancy that makes you so physically ill that there is no such thing […]

  • 🙁 I had HG during my pregnancy, and I can also attest to the fact that it is more painful than childbirth! I was hospitalized, medicated, and such – but the worst thing in my experience was the rude and condescending comments that came my way from “super moms.” Like I was supposed to just get over it and buck up. HG is a relatively rare condition for pregnant women, and is a very serious medical problem that needs more awareness. Thank you for sharing your story.

  • […] in disbelief as pregnant women around me seemed able to eat anything and had boundless energy.  My experience could not have been more different.  I suffered quietly through my miscarriage with my childless […]

  • This is an amazingly interesting and sad story. Thank you so much for sharing this.

    It makes me so incredibly angry that the American medical system is full of dismissive, arrogant doctors who can’t even spell bedside manner. I can’t even imagine how you went through this.

    One of my family members was also ridiculously sick for two of her pregnancies and lost weight the whole time. Her kids didn’t come early, though. This sounds like what she had though. Crazy.

  • Lianne

    This story really touched me. 🙁 I’m so so sorry you had to go through that experience with unhelpful and uneducated medical care. It’s sickening. I’d say the one good thing about Kate Middleton being hospitalized with HG is that it’s bringing the condition to the public eye and legitimizing it. It’s not just morning sickness, it’s a real and traumatic condition that could be life threatening. I truly hope the medical community is more understanding of it now, and I’m so thankful I have an OB/GYN practice with awesome staff.

  • Lynn J

    I’m so sorry for you and your baby for having to go through that ordeal! Horrible!
    Like when I was told twice by the same doctor in the emergency room that I was just hysterical and I didn’t really have any pain. It was all in my head and I was just “a nervous woman”. I guess the vomiting was all “in my head” too! I went to another hospital the third time and it turned out to be an inflamed and infected gall bladder, tons of stones and the beginning of jaundice due to a blocked bile duct. After major surgery and twelve days in the hospital I was able to go home.
    Doctors need to listen to women! We know when something is wrong with us!
    God bless you, your daughter and son! ♥

  • […] exhausted mama. I weighed twelve pounds less than the day I conceived, my body broken and weak from hypermisis gravidarum. My sweet girl struggled, too, and the neonatologists very quickly told me that I had to abandon […]

  • Good gracious me, I genuinely cannot believe what you had to go through! I thought I had a tough time with my first (there’s a post about it on my blog) but I completely feel for you. I don’t really know what to say, other than thank you for sharing your story x

  • […] the story that sticks out the most is from my friend Amy, who wrote about her experience with Hyperemesis Gravidarum (HG) and I cannot imagine a pregnancy that makes you so physically ill that there is no such thing […]

  • […] emailed me in October of 2003. I was in the first trimester of my pregnancy with Emma. She said she had to talk to me about something, and I wrote back yes, soon, please! And are you […]

  • […] turned to my husband and I said, “We’re never doing this again.” I had survived an entire pregnancy of debilitating illness, my 8 weeks premature daughter had made it out of the NICU after three weeks of roller coaster days […]

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