From the time I was a young girl, I always wanted to be a mother.  I assumed that I would have my children young.  (I didn’t.) And, because I never suffered with any “women’s troubles”, I also assumed that I would have a wonderful pregnancy.  I had visions of pregnancy as a joyful time of eating bon-bons and wearing cute maternity clothes.  For some reason, even the idea of childbirth itself didn’t trouble me particularly.  I had a lot of faith in Western medicine and was confident an epidural would take care of all that.  So, when I found out that I was expecting, I was thrilled.  I raced out to buy my obligatory copy of What to Expect When You are Expecting.  And I made a long list of possible names.

Exactly six weeks and one day into my pregnancy, I felt a little ill following breakfast.  I raced to the bathroom to throw up – and never stopped.

At first, I was sure that it was typical morning sickness.  I tried various wisdom remedies.  The ever-present cracker, ginger tea, sucking on a lemon, motion sickness bands, over the counter nausea syrup, etc.  I’m fairly certain there is nothing I didn’t try.  A couple of weeks later, the nausea and vomiting was steadily increasing.  I wasn’t functioning at work.  I was there, but often yakking in the bathroom.  I had attempted to keep my pregnancy quiet at work, but my obvious sickness made it an open joke.

Everyone, including me and my doctor, thought it would go away.  But it didn’t.  After a couple of incidents of in-office IV fluids, I was prescribed Phenergan.  It barely touched the vomiting, but did nothing for the nausea.  What it did do was keep me so heavily sedated that I could sleep away a lot of my misery.  But my performance at work suffered — a lot.  I was just showing up, in between days of not.  After being admitted to the hospital for a couple of days due to dehydration and high ketone levels in my urine, I was prescribed the anti-emetic Zofran.  (Zofran is often used with chemo patients suffering from nausea.) At that time, it was over $1000 a month – with insurance.  I ended up finding a Canadian pharmacy and had it shipped to me for around $350 for a three-week supply.  On Zofran, I was down to once or twice a day vomiting.  That enabled me to keep things down a bit better, but the nausea remained for the duration.

Please do not ask a hyperemesis sufferer if she has “tried eating a cracker”.

It was during that time that I learned the name of what I really had.  Hyperemesis Gravidarum.  Hyperemesis occurs in less than 2% of pregnancies and is marked by dehydration, malnutrition, and other serious complications.  In its most severe form, renal failure and even death can occur.  (Although, with the advent of total parenteral nutrition and medications, this is rare today.)  The writer Charlotte Bronte (Jane Eyre)  is thought to have died from hyperemesis.  Approximately 10% of HG pregnancies are terminated for the health of the mother.

Emotionally, I sank to levels of self-pity that I’m not proud of.  Even though I knew that having a terminal illness or chronic condition wasn’t at all the same thing  (for my having a light at the end of the tunnel), I suddenly empathized with everyone who had ever endured chemotherapy.  I wasn’t in pain.  I still don’t know what day in and day out pain feels like.  But I know all about the effects unrelenting nausea and vomiting.

I was vomiting blood for 8 months.  Your throat gets so irritated, that you pass blood when you throw up.  I sported petechial hemorrhages all around my eyes for the duration of my pregnancy due to all the vomiting.  And I popped a few blood vessels in my eyes as well.  Riding in a car can feel akin to hurtling down a roller coaster.  There were few, few moments at all that I wasn’t distinctly aware of being pregnant.  Simply because I was so sick.  I felt the urge to throw up every moment of every day – without fail.  It was suffering on a scale I am shaken to remember.  (I don’t think there has ever been a woman quite so happy as I to be induced with Pitocin.  Ironically, for all the misery of the pregnancy, my delivery was a breeze.)  But for months afterwards, I experienced depression.  My body was greatly weakened.  Four days after I delivered, I was 20 pounds less than when I got pregnant.  It took weeks for the nausea to slowly ease and for me to be able to eat anything resembling a full meal.

The inventor of Zofran has assuredly been reserved a nice pad in Heaven.

But what exacerbated the misery of it all was the ignorance of family, friends, and acquaintances who’d never heard of hyperemesis.  When it is explained to them, many respond with suspicion.  It is assumed that hyperemesis is just a pretty name for the morning sickness that most pregnant women experience at some time.  So, sufferers get a lot of unhelpful advice.  If only I had the proverbial dime for every cracker discussion I endured.  People suspect what they don’t understand, and they judge accordingly.  I was given guilt trips for losing weight, told that I wasn’t taking care of my baby by being so nutritionally depleted, given condescending pats, assured it would go away, and even told that I was “lucky” they didn’t treat me with what they used to do for hysterical pregnant women — locking them in a dark room until they no longer complained of nausea.  It’s bad enough being sick all the time.  It’s even worse to be told that you are imagining it or you are a hypochondriac — simply because it is beyond their understanding.

Following my first pregnancy, I was erroneously told that the likelihood of experiencing hyperemesis again was less than 10%.  (The actual figures are 50/50 and possibly higher.  After two hyperemesis pregnancies, it is all but certain you can count on a third.)  Wanting another child close in age to my first, I didn’t take the risk seriously enough.  Hyperemesis pregnancies should be planned.  There are high-risk obstetricians with experience in dealing with it.  There are even now 24 hr. Zofran pumps that a woman can wear and go about her daily life.  It is really important to be in the best shape possible before getting pregnant again.  I didn’t.  I got pregnant again less than one year later.  The second pregnancy was much worse, finally resulting in me having to go out on disability until delivering.

Your next question is likely to be one I have wondered for some time.  No, there are not any reported links between autism and a hyperemesis pregnancy that I can find.  However, hyperemesis is not exactly a popular subject of scientific study.  You can find message board threads of HG moms wondering the same thing.  Since the causes of autism have not been anywhere close to being sorted out, and – since the causes are likely to be varied and many – I doubt anyone could say.  However, there is some suggestion that an “environmental insult” during pregnancy could be a cause of autism.  I have my suspicions, and I’m curious to see what science comes up with regarding a possible link between the two.  I don’t think it is beyond the realm of possiblity that nutritional depletion of its mother could be an “environmental insult” to a fetus.  I will say that the concern is yet another reason I have chosen to not have the third child I have always wanted.  My children were well worth the hyperemesis, but I would not want it to endanger a third child.

It has been three and a half years since my last pregnancy.  And I’m still not back to normal.  I have no idea why.  I still wake up most mornings slightly nauseous until I get moving.  Motion sickness is an everyday problem for me.  I have a hair-trigger gag reflex and am much more sensitive to smells and medications.  Now I understand why bulimics have trouble learning to eat again.  It’s because vomiting is a reflex that can be hard to break when you are in the habit.  My mind knows I’m no longer pregnant.  But my body will not forget.  And, while it has occurred to me that I’m simply crazy, there are too many similar postpartum reports from other women like me to think that it is all in my head.  Hyperemesis can, apparently, have effects lasting for years.

A Zofran pump delivers a constant dose of medication that is often more effective than pills.

I wish that I had known more about it before going through it twice.  I adored my doctor and midwives.  But, in hindsight, I know I would have been better off seeing a specialist with experience in dealing with hyperemesis.  (I sure wish I’d known about that pump.)  But it taught me a lot of things.  It taught me compassion for those who suffer.  It taught me to assume nothing about subjects I’m unfamiliar with and to avoid judging others.  It taught me how to endure.  And I learned a lot about who my friends really are.

If you want to learn more about Hyperemesis Gravidarum or you are seeking to prepare for a pregnancy with it, I highly recommend visiting HelpHer.org.  In addition to information, you can find support there as well as a list of doctors with experience in treating patients with the disorder.  That could make all the difference for you for someone you love.

Note: I am NOT saying that autism is caused by hyperemesis.  I’m just saying that I am a human being and that human nature is to wonder.  Since there is no definitive list of causes for autism, and since they are likely to be many, I am merely saying that I wondered if one day a link between maternal nutritional deficiencies and autism might be found.  Obviously, being a mother of an autistic child, I would never dream of attempting to “blame” women for their children’s autism.  For anyone insisting upon being overly sensitive, I might point out that there are, in fact, causes somewhere and that wishing there weren’t won’t change anything. In the end, science will tell the story.  🙂

17 responses »

  1. MrsC says:

    I’m not sure whether it’s big news on your side of the Atlantic, but hyperemesis gravidarum awareness has just got a huge boost on the European side – Prince William’s wife Kate has been hospitalised with HG, forcing them to announce her pregnancy a little earlier than they had intended. As soon as I heard about it yesterday, I thought of you! 🙂

    So now, everyone (in the UK, at least) knows:

    – What HG is
    – How it is treated
    – All the stats about frquency.

    I’m reasonably sure that nobody asked the Duchess of Cambridge whether she had eaten a cracker…

  2. dogfordavid says:

    And I thought my pregnancies were difficult (Ehlers Danlos and Autonomic Nervous System Failure)

    I am glad you and your children came out alright and pray that your body can and will heal for you soon.

  3. skirrel88 says:

    Thank you for educating us on this subject, and I’m sorry you had to go through all that. I had no idea this was a thing, although I do know a woman who was sick during her whole pregnancy but smoking pot (I know, I know) helped her be able to eat and give nutrition to the baby. It’s possible that this could count as an “environmental insult” but I wonder how much of a deficiency has to be present in order to be considered an insult. I didn’t gain weight for the first 5 months of my pregnancy, not because of sickness, but because I just didn’t feel like eating all that much. I think I gained only 18 pounds when all was said and done. I thought I was being super healthy because I gave up my favorite things: coffee, ice cream, and sweets. However, maybe that initial lack of weight gain was enough to cause some kind of issue for my child. Who knows? It’s an interesting thought.

  4. Tracy says:

    I got pregnant on my honeymoon (literally) and the HG began soon afterward. I was admitted to the hospital three times for dehydration, having to stay several days each time. Zofran was my friend. I had so many IVs for rehydration that I developed a phobia of needles. I prayed every day to never get cancer because I didn’t know if I could face the nausea of chemo. God has a sense of humor (and listens to prayers), because I actually did get cancer two years later -thyroid cancer that is treated with only radioactive iodine and not chemo. I was thrilled when I learned that.

    I got to suffer through the HG with my sister-in-law, who was pregnant at the same time as me and was puking away right along with me. That did help, but it was the very darkest time of my life. The HG was definitely worse than the cancer.

    My husband was a champ. He didn’t eat in the house because the smell made me puke. He cooked all his meals in the utility room outside in a crockpot or a toaster oven or he got food from a restaurant and ate in the car before coming in. And the older women…they were my my saving grace. When some of the older women in our church came and told me their stories, in hushed tones, of how they hadn’t been able to stand the smell of their husbands or how they couldn’t drink coffee for years after being pregnant, how they, too, prayed so hard to just die and be out of their misery…it was only then that I believed it would eventually be ok. Just knowing that others had suffered and survived.

    Mostly I encountered sympathetic people. Actually, I mostly didn’t encounter people because I became so weak that I couldn’t walk without assistance, but the ones I did see were kind. The only unhelpful person was my mother-in-law who cheerfully recounted to me at every opportunity how Wonderful she always felt while pregnant and how she never had such a feeling of wellbeing as when pregnant. I was happy for her, but didn’t really want to hear that so often while I was heaving.

    I still have a degree of lingering nausea nine years later. If anyone bumps me, I feel seasick. Brushing teeth is not fun.

  5. Niksmom says:

    WOW. That sounds utterly horrific (except for the having adorable kids afterward). I’m gobsmacked that people would feel it’s any of their business to judge or to make assumptions about your pregnancy. Holy cow.

    I imagine, just from the comments shared by other women who experienced HG, that your post will help lots of people in both learning more about it for themselves and in being more compassionate –or at least less thoughtless, toward others.

  6. I had HG with my autistic son (he’s an only child). It was just as horrible as you describe, but mercifully my nausea began to subside around 20 weeks. I too have had lasting effects of a hypersensitive gag reflex since my pregnancy. I can’t brush my teeth still without feel nauseated or dry-heaving. Some people have looked at me like I was crazy for saying that I still get nauseated easier, but it’s good (and validating!) to know I’m not the only one!

  7. Jessica Fredrick says:

    I wonder how many of us who endured HG had PPD? I fall into that category and my depression has not gotten under control without medication since I had HG, 3 1/2 years ago.

  8. Stimey says:

    Wow. I’m so glad you wrote about this, because I had no idea. This sounds so enduringly traumatic. I’m so sorry that you and all the commenters above me have gone through this.

  9. Kevyn Creech says:

    All three of my pregnancies were HG. My first was the absolute worst, and I, too, knew I was preggers before I’d missed a period. My oldest is 15, so Zofran wasn’t an affordable option at that time. She was also extremely colicky for the first four months of life, and I suffered a very bad case of PPD. Although my second and third pregnancies were cake walks compared to my first (I only vomitted 4-5 times per day for 24 and 22 weeks respectively, as opposed to vomitting 5-8 times per day for 35 weeks through delivery with the first baby), I also suffered a horrible, longlasting case of PPD after my third child. The longterm effects of HG that still hound me include: A) free bleeding, B) giant hiatal hernia, C) esophogeal erosion (have to take daily meds), and D) severe TMJ issues including missing bone from the tip of my lower, right-side mandible.

    I had the privilige of working with Kimber, the founder of HelpHer, and I highly recommend this organization to anyone who is suffering or has suffered HG, as well as anyone who’s loved one is suffering or has suffered HG.

  10. Ann Burt says:

    Whoa! Just like me, and I was like this through all 3 of my pregnancies. Knew I was pregnant before I missed a period. My ongong joke is that I vomit from conception to delivery. My youngest is 19. Didn’t have the pump you talk of. Vomited all meds they put me on. Numerous IV therapies, hospitalizations, blood from vomiting. This was awhile ago for me, so forgive my faulty memory, but at the time the OB I had was amazing. Anyway, she referred me to a woman named Margie Profitt, who had been given (I think) a MacArthur award to study hyperemesis in pregnant women and I was one of the women that filled out a questionaire, and had medical records etc. forwarded to her. I never found out what results if any she came up with, but it was a revelation to know there were other women around with the same problem. Again, could go on and on about all the people who thought I was just being dramatic (if you know me at all you would know that’s ridiculous) or looking for attention because I was pregnant. Did read an article years ago somewhere that thought there might be a link between this and excessive testosterone in pregant women, and a link with that and ASD. When my ASD son was born he had amazing muscle tone and definition, not at all chubby baby body. At over 9 pounds, you’d of thought that would have been the case. Other two kids NT and also over 9 pounds, and chubby little cuties. Was wondering if anything had been done to help women with this issue, sounds like not. Have been very lucky that mine was gone, and I mean GONE, within 24 hours of giving birth. Hope things get better for you over time. Still enjoy your postings and FB stuff! Keep up the good writing, ADB

  11. My only two children were both HG pregnancies. My oldest is autistic and my youngest is NT. My first pregnancy was horrific. I lost 30 pounds in the first 3 months and tried everything that was suggested. I finally settled on Zofran. Then came the dreaded constipation that led to several traumatic ER visits (thank GOD for Dilaudid). By trial and error, I realized that 1/4 of the pill I was taking would cover the nausea and keep the constipation at bay. Labor was 29 hours before they finally decided on a c-section due to maternal exhaustion. My OBGYN said my next pregnancy would likely be different. (Where do they get their information? lol) My first pregnancy definitely prepared me for my second one, HOWEVER, my second pregnancy was bad enough to warrant a PICC line in my arm to deliver fluids everyday so I didn’t get dehydrated, so that I could in turn, EAT. Imagine unhooking your lines, injecting saline flush, flushing with heparin, hooking up the bag of fluid and then screwing in the line again…..all with ONE HAND. Yeah, 8 months of that and I could have had my BA in nursing. I hated it when people gave me the same advice over and over. Do this, try this, have you done that? I also had sciatic nerve pain which resulted in damage and what I believe (but have yet had a sympathetic doctor prove) to be Fibromyalgia. Boy, these kids owe me BIGTIME. lol

  12. Jessica Fredrick says:

    I forgot to add: the pump is a lot of work. I too felt like I could empathize with terminally ill patients. I had to jab a needle into my leg three or more times a day, causing a huge welts all over my legs. The knots took months to disappear. It was difficult to find a place to insert a needle. The batteries, medication, and more have to be changed on a regular basis. I still have a huge amount of respect and empathy for anyone who has to deal with pumps of any kind.

  13. jennifer says:

    Yep. Me too. I had to carry around a plastic grocery bag with me at all times. When I was in the classroom, I had to carry the garbage can with me from my desk to the board. I would vomit, wipe my mouth, grab a piece of gum and try……completely miserable and everyone around me completely aghast. There was never even one moment that I did not feel like throwing up. I had a section at 32 weeks.

    • Kevyn Creech says:

      Girl, I had doubled plastic grocery bags everywhere: the car, my purse, my briefcase, my desk, etc., etc. I taught during the first 1/2 of my first HG pregnancy, and I have no idea how I survived. I wrote a short story about it, which includes a scene in the ladies’ bathroom and plastic bag failure….ugh.

  14. Jessica Fredrick says:

    I dont’ know if this will make you feel better about this at all but I had the Zofran pump with my now 3 year old daughter and it took the edge off, at best. It was not better than the Zofran pill for me. I also endured horrible contipation, so bad that I cried for days for relief. I now have huge hemroids and I’m embarrassed to go to the dr about it.
    I had severe “morning sickness” with my first two pregnancies but didn’t have full blown hyperemesis until #3. My ASD child is my first one so the link between hyperemesis and ASD would not apply to us. My third child is my brightest and NT one.
    I liked reading how you feel different after the hyperemesis because I thought I was crazy with the same symptoms you write about on here. I’ve had two surgeries since my last pregnancies – appendix and gall bladder removal and I still get nauseous and awful pain that I never had before. Thank you for helping me feel “normal” again, just as most of your posts do.

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