I don’t know how to tell you about Hyperemesis Gravidarum

by Jessica Martin-WeberHG awareness 2014

Today is Hyperemesis Gravidarum Awareness Day and I don’t know what to say.  I don’t know how to tell you why this matters to me or what HG is like.  Though I’m used to being able to express myself fairly well in written word, for some reason I just can’t find the words.  The truth is, I just don’t know how.  There’s too much and it is still so hard to talk about.

I don’t know how to explain the way HG robs everything wonderful, everything beautiful from pregnancy.

I don’t know how to tell you that though I wanted every one of my babies, I never wanted to be pregnant.

There are no words to describe the guilt I felt and grief I sometimes still have over hating pregnancy.

I don’t know if I can even begin to explain how much I wanted to “just eat” but every time I ate my insides would turn inside out and punish me for hours until there wasn’t even bile left.

Or the courage it takes to admit I wanted to end my pregnancies or my life.

And I don’t know how to tell you that sometimes it was hard to hear about or see happily, glowing pregnant women.

Because I know, I KNOW that even with that I am one of the lucky ones.  I got to have my babies.

I don’t know how to tell you that being told I was lucky I got to be skinny while pregnant or how good I looked made me crumble that people couldn’t see how I was dying, physically and emotionally, on the inside.

I don’t know where to start on the toll HG takes on my family, my husband and my children have suffered under this burned more than I can say.

I don’t know how to explain what it’s like to vomit so much you can’t breathe.

I don’t know how to share with you how the force of vomiting and dry heaving out of control leaves you spent and dizzy and gasping for air.

I don’t know what words to use to paint the picture of never ending nausea and vomiting.

I don’t know the way to make you understand why I stopped counting how many vomiting sessions I had in a day once I reached 24 even if it was only noon.

And I really don’t know how to spell out what that looks like every day all day for 40 weeks.

Because I know, I do KNOW that it could have been so much worse.  I got to have my babies.

I don’t know if it will make sense that I couldn’t eat anything, no matter how hard I tried, not even crackers or ginger or anything else.

I don’t think you’ll want to hear how much I wanted to take said crackers, ginger, or anything else and shove them where the sun don’t shine to the next person attempting to be helpful that suggested I “just” try that.

I don’t know if I can handle sharing how my nurses would try to find a viable vein in my dehydrated body and still fail after a dozen attempts.

I don’t know how to tell you that nobody doubted me having absolutely no control over the HG as much as I did.

I don’t know if I can make it clear how much I felt like a failure every day, every time I vomited, every time I heaved.

I don’t know if blame even touches the contempt I felt for myself when my babies weren’t growing well.

Words fail me when I try to explain the confusion, depression, and physical bleakness that comes with dehydration.  I was almost always dehydrated.

And I don’t know when I’ll stop crying when I confess that I was always afraid of how this was hurting my growing baby.

Because I know, I KNOW so well that in the end it was all ok.  I get to hold my babies.

I don’t know if I can deal with your questions as to why I would continue having babies if my pregnancies were so terrible.

I don’t know why you would want to hear about how I got down to 83 pounds at 5 months pregnant, my skin yellow, my organs failing, and how as much as I wanted to just eat, I couldn’t.

I don’t know if I can keep it together to recount the things people, health care providers, said to me as I fought to get well.

I don’t know what stories to tell, like how my toddlers would pretend to throw up, that I christened every place I visited in my town, or how I would do my job in between vomiting- if I could not pass out long enough.

I don’t know if it will make any sense that I have a love/hate relationship with my PICC scar, a bittersweet reminder of what it took to survive growing my babies.

I don’t know how to describe the taste of bile and then blood on my tongue for weeks at a time.

The gratitude I feel for those that believed me, fought for me, and took risks for me defies adequate expression, I know they save me.

Because I know, trust me, oh how I KNOW that this agony ended well.  I get to hold my babies.

I don’t know the vocabulary required to detail what the caustic stomach juices did to my throat and my teeth and my spirit.

I don’t know how to tell you the fear I still hold that being on the maximum dose of Zofran and the drug cocktail that was poured directly into my veins harmed my babies.

I don’t know if I can voice the even greater fear that organ failure and ketosis was harming them more than the drugs ever could.

I don’t know how to narrate the experience of trying to decide if I should save the life of the mother of my existing children or hope to live through my body shutting down to try to keep growing their little sister.

Or the anxiety I have that my daughters will face the same fate when they begin to have children of their own.

Because I know, please know that I KNOW how blessed I am to even have my children.

But I know this too, more people need to be aware of HG, to help with research, and to help support those families impacted by HG.  I know this.  To learn more about HG please go to helpher.org.

 

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Comments

  1. As a fellow HG sufferer, this has me in tears. You were pregnant with Sugarbaby while I was pregnant with my daughter. Some of what you shared at the time helped me get some help. I remember emailing you about eating healthy and your response to eat and drink whatever I could relieved a bit of the guilt I felt as I tried almost anything.

    I fear what it did to my then two year old son…shortly after my daughter was born he was diagnosed with a severe speech delay. The guilt and responsibility I felt for the months when I couldn’t speak without vomiting nearly crushed me.

    Thank you again for sharing what I know to be painful. It still helps to know I’m not alone.

  2. Heather H. says:

    Thank you so much Jessica. Thank you. Thank you. Thank you 1,000 times over. As a fellow HG survivor, I know first hand how hard it is to tell your HG pregnancy stories. But I also know that at least for me, reading your story helps me process my own just a little bit more, get closer to healing the broken emotions that come with the broken HG body, but don’t go away after baby is born. So for that I say thank you. Thank you for laying yourself bare so that others may heal, be educated, or understand. Thank you.

  3. Ashley Barrett says:

    I didn’t have it as bad-I didn’t lose as much weight as you did but I did have heart issues because of my hyperemesis and the medications that wouldn’t let me puke at all. I would dry heave to the point I couldn’t breathe and ended up really dehydrated. It really took so much time away from my other children. I felt so so bad that the iPad became their babysitter because them even touching me was a trigger :(. My 3 kids are worth it to go through it each time I just feel so guilty and wish something I would have done would have prevented it though I know I couldn’t prevent it. I HATE when doctors tell me oh if you did x, y, or z you wouldn’t be in this situation (did that, that, and that!) or “just MAKE yourself eat and drink” when I couldn’t even hold water down or swallow :(. Big big hugs! No one fully understands unless they’ve been through it.

  4. Samantha Sehr says:

    You said it so well. 3 pregnancies, each with worsening HG, and we have to be done having children. I felt all the things you said. Mine thankfully let up some around the 20 week mark, but I had other complications- pulmonary embolism and dealing with blood thinning shots. I don’t know if anyone can understand fully what you wrote unless they’ve been through it themselves. Thanks for sharing. Blessings to you.

  5. Cheryl Rahkonen says:

    I have 8 children and had never heard of this condition. Thank you for informing us and bless all of you that has been through this terrible ordeal.

  6. Brittney Hyland says:

    Thank you for this article, thank you for bringing this horrible disease to light. As a HG sufferer I relate to your story far too well! The people who called me a baby and said I was being dramatic will never understand the pain and agony we have been through. We are survivors and so are our babies. The depression, the regrets, the self hatred on top of our bodies breaking down is torture. Some women and babies aren’t lucky enough to make it through. I pray for those families and every woman who has and will suffer from this. #wearesurvivors

  7. jennifer walsh says:

    Thank you so much, I don’t think I have ever read anything that describes HG so well, I had it on each of my 3 pregnacies, its hell, in crying trading it thank you, Jennifer

  8. This article made me happy and sad at the same time. Happy that there is an accurate article to bring awareness to this horrible ailment and sad because it rings so true with what I, and others, have experienced. My HG has gotten worse with each pregnancy. My throat is so damaged that people are constantly asking me if I’m sick or have laryngitis. I try to explain that it’s damaged from being so violently ill during the first half of my pregnancy.

    At the hospital, the nurses would hand me a printout of how to “handle” nausea (eat crackers, drink ginger ale, small meals, etc.) and I would just laugh/cry. One of the doctors said that sometimes when he doesn’t feel good, he drinks a milkshake because it’s cold and smooth and won’t hurt if it comes back up. Yep, no clue! I lost 25 pounds the first month and felt like I wanted to die every second of the day.

    On top of staying in the hospital (and worrying about my husband and other children), my one year old was diagnosed with a chronic, incurable disease right when I started getting sick. I would not wish this on anyone, but it’s nice to know that someone, somewhere, knows what I am suffering mentally, emotionally and physically. Thank you!!!

  9. Although this was difficult to read, I want to thank you for the italicized portions. As a baby loss mom, that totally would have been my thought but the fact that you brought it up allowed me to see past that and really empathize with you. <3

  10. I just wanted to say what a very brave woman you are to share this. It is proof that you must be a wonderful mother to have all those worries for your babies when your life was at risk, and what awful decisions to be forced to make. I have such a huge amount of respect for you and every other mother who has had to go through this. x

  11. It’s amazing when I hear someone who REALLY gets it. Who knows what I mean when I say, “I hated being pregnant!” And, that that is an understatement at best. I never realized it had a name in of itself outside of SEVERE, MISERABLE, morning sickness as I always called it. I guess maybe my doctors gave me the technical name at some point in one of my three living hell pregnancies but I was so in my own world that I obviously missed it. Don’t get me wrong, I wanted my children, more than anything or I never would have done it 3 times. Although I must admit getting boys every time played in big part in my ability to send myself into that abyss 3 times over again. Finally on the third visit to my doctor at 5 months pregnant, where they announced I was once again carrying a boy, I threw the towel in. There was no pink in my future, EVER! But, I do secretly sometimes wonder if a girl would have wrecked such havoc on me. I remember the doctor asking me after that last c-section if I was certain I wanted my tubes tied. My morbid response…”I don’t care if my husband and children die in a freak plane accident and I have to ‘start over,’ I NEVER WANT TO BE PREGNANT AGAIN.” Sounds awful, I know, but I share it so that other women experiencing this understand that all the awful things that run through our miserably pregnant minds are okay. You will love your baby as unconditionally as any mother who brags how beautiful her pregnancies were. Hell, maybe more. Afterall, we have something they dont…The ability to say it was the worst experience of our lives but we wanted our babies so much we did it anyway. Stay strong…you can and will survive and it IS okay to feel miserable. (It’s also okay to want to smack women who say, “oh yeah, I had morning sickness,” and then follow it with some rant about how to survive with their home remedies or worse yet, about how you aren’t being tough enough. Make it a good one for all of us if you do though. Good luck mommas!!!

  12. Thank you Jessica. I appreciate the article. I was reminded of the loss of sleep, literally waking every hour or two through the night for no reason other than to vomit. It was hard for friends to conceive I vomited every day until the day I gave birth. Although my symptoms were not as severe as yours, I still ended up in the hospital on an IV. It was difficult to explain the various symptoms because I knew many women would liken it to the milder type of morning sickness they may have experienced. You made it plain!

  13. WOW! I NEVER HEARD OF THIS!!! Here I thought it was just because of my
    Crohn’s Disease! But now this makes WAY more sense! I had this with my daughter. Except I was 92 pounds to start with and went down to 79 pounds. Puked 24/7, night and day! I remember waking up every 15 mins and puking mostly bile ALL through the night, waking up from exhaustion and heading to work. After I would get to work hope and pray I made I made it to the bathroom before loosing breakfast and preg vit. New Years morning, At 5 months was hospitalized for one month because I was unable to walk and extreme fatigue, dehydration, and pain! Was on an IV for Fenergen for nausea, pain reliever, and sugar water! Then I got bloated with water, I looked chubby and fat! My self esteem went to zero! For one month I ate pretty much nothing!! I was given a pick line and ended up with a blood clot. So we lived on sugar water. My daughter is my miracle baby! I wouldn’t trade her for anything!

  14. You were able to put into words how I felt about HG but was never able to explain. I don’t think you can understand how bad you feel unless you have experienced HG. My babies were born 27 and 30 years ago but the sadness of not enjoying being pregnant never leaves. I remember with guilt wishing to miscarry to end my suffering. But like you said I got to hold my babies and wouldn’t have changed that for the world.

    Right now I am so worried that my daughter will suffer from HG when she is pregnant. Does anyone know if this is an hereditary condition?

    • Hi Linda,

      This is a huge fear for me as well. While there are still a lot of questions about HG, there does seem to be some sort of genetic element to it and it is suspected to be hereditary. Not all women with mothers who had HG will develop HG though. ~Jessica

  15. Thank you so much for being willing to go there and try to tell people about HG. While I did have rough morning sickness, I did not reach the levels of HG.

    No, I saved that for later…

    After years of daily HG-like symptoms, with the addition of crazyAbdominalPain, I was diagnosed with Cyclic Vomiting Syndrome (think HG+migraines+crazyAbdominalPain). Sadly, there is no baby at the end of this…nor is there an end.

    Your mention of genetic links with HG made me wonder about mitochondrial weaknesses. They think it’s part of what’s up with CVS — that our bodies aren’t producing the right stuff to fuel our cells. Since stress is a huge trigger, and many, many women with CVS have HG, it makes me wonder if there might be linkage…or if the supplements (CoQ10+L-Carninitine) that seem to help a number of CVS patients might help women with HG. (Meaning not “you should do ____” but rather “you might be interested in more data to look at.”)

    Man, where are our damn tricorders to just fix all this weirdness?

    Anyway, thanks for this piece. It really helps me explain what I go through in a way people can relate to.

    ~beth

  16. Thank you so much for putting into words what I felt about being pregnant. I had HG with my twin girls 3 years ago and it was the scariest, most unnerving experience EVER! People are constantly asking me if I plan on more kids and I always respond with “I would never get pregnant again!” I will never forget sitting on the bathroom floor and crying, not only out of exhaustion, but more so out of fear – if I wasn’t eating anything and I was this weak, what were the babies surviving on?

    I agree that more needs to be done to create awareness for this condition – my husband and I had to fight tooth and nail for the insurance company to cover Zofran, since the generic versions didn’t work for me.

    Thanks for sharing!

  17. Thank you so much for sharing. I went through HG 10 and 12 years ago. I hardly found anything or the web at that time. I felt so alone and discouraged. I received no help with my first. I am not sure my doctor believed me. He just told me I needed to eat more. I always wonder in the back of my mind of that is why my son has learning disabilities. It breaks my heart to think maybe he wouldn’t have to struggle with some of the things that has had to. My second pregnancy was worse. Thankfully I had a new doctor who took me seriously. I was getting hydration but then developed a deep vein thrombosis so I could no longer receive fluids. I was mostly bedridden. Thankfully my daughter and I both survived. As you said it could have been so much worse. I too was able to see and hold my children.

    I would hear things like “Yes, but wasn’t it worth it” or see others roll their eyes. Of course I wouldn’t give up my children for anything, but I do still feel grief over not being able to have the two other children we planned on and over the time I missed out with my son. I really don’t remember him at 16 to 24 months. It still hurt when both sister-in-laws were pregnant and I knew that would never be me again.

    Thank you again for speaking out. Thank you for giving those of us who have experienced HG a voice. Other women need to know they are not alone, and what they are feeling is real. It is not some weakness or mental disfunction.

  18. Thank you so much for this post. I suffered twice with HG with both of my pregnancies. It was very hard the first time. I could not eat, or do any daily activities. I had an allergic reaction to one of the anti-nausea medications so severely, that I felt like I couldn’t move or breath. I was rushed to the emergency room that time and many other times throughout my nine months, including a 3 week stay at the hospital. With my second pregnancy, I had a hard time trying to find the right medication. I missed my son’s 2nd birthday because I was so sick and green. It was so bad that I ended up losing one of my twins. My world was shattered. I felt so guilty that I could not give the twin fetus enough nutrition, enough food to grow. After 5 months, I finally began to feel better with the help of zofran, but I still had attacks of HG all throughout my nine months, even while delivering, if you can believe it! So yes, yes, yes HG is a serious condition. HG is not just morning sickness. And it can be devastating. I pray for all women who suffer with HG.

  19. sadiesays says:

    Blah blah blah cry me a river. When I see the amount of children there are in the world with no one to call parents I think of you martyrs whining like you have done such an honorable sacrificial deed by being pregnant. If you all stopped wanting to HAVE things and just wanted to be a Parent there are plenty of children already. No one asked you to get pregnant, Adopt.

    • Because, of course, ANYONE can ALWAYS adopt! Poor people, gays, divorced/single people – JUST SHUT UP, sadiesays, you arrogant jerk!!!

  20. @Sadiesays. You are the reason the world is the way it is. Would you tell a dying person to get over it, someone hurting that desperately wants something you don’t matter. You are correct that no one forced us to get pregnant and many of us eyes wide open jumped into that decision BUT that does mean that we desired to go through that or we should give up on our dream because it is too hard. There is a difference between having a little morning sickness and having HG and if you can not respect the people that have fought this then please kindly go away. And remember the next time you complain about something you elect to do in your life the feeling you get when someone tells you to get over it.

  21. There are some evil people in the world who have the compulsion to spew their hatefulness for some sick reason. Sadiesays is such a person. Get some help with that, ffs.

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