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Understanding Hyperemesis Gravidarum

January 9th, 2013

by Ann Marie King, Co-Founder, HER Foundation
and Marlena Fejzo, PhD, Geffen School of Medicine, UCLA

The world recently celebrated the news that Kate Middleton, Duchess of Cambridge, is expecting a baby. We also learned that the Duchess suffers from hyperemesis gravidarum (HG). Most people had never heard of this pregnancy complication, and much of the media misrepresented Kate’s ailment as “morning sickness.”

Mothers who have suffered from HG will attest that referring to HG as “morning sickness” is like calling a hurricane a light rain. While hyperemesis gravidarum does share some symptoms with the first-trimester “morning sickness” experienced during 70% of healthy pregnancies, the comparison is grossly misrepresentative.

In fact, hyperemesis gravidarum is the recognized diagnosis of a debilitating and potentially life-threatening pregnancy disease marked by rapid weight loss, malnutrition, and dehydration due to unrelenting nausea and/or vomiting. The severity and duration of HG varies, but it prevents women from performing their regular daily routines; creates persistent physical and emotional distress; and is linked to significant costs for fetal health, maternal health, and the economic wellbeing of families and communities.

At the HER (Hyperemesis Education & Research) Foundation, we’ve heard from thousands of women seeking help, compassion, and hope. During what should be a joyful time, expectant moms suffering from hyperemesis gravidarum often feel trivialized and unsupported, even by the healthcare professionals treating them. Many report a lack of consistent, proactive medical treatment for their hyperemesis, while symptoms worsen and health complications escalate. We’ve found that one of the most important factors in making it through an HG pregnancy – and one of the challenges – is a woman’s access to a healthcare team whose members are aware of the latest HG research and treatments, and who show compassion for HG patients. It is heartbreaking that many women come to us ready to terminate their wanted, planned pregnancies because they and their families are desperate for physical and emotional relief. The HER Foundation works to help these women find an HG-friendly physician and support network to avoid this outcome.

Women who have suffered from hyperemesis are begging for answers as they recover from devastatingly difficult pregnancies, and with the knowledge that they face an 80% risk of experiencing HG again in future pregnancies. More than 75% of HG women decide to reduce their family size because of the condition’s debilitating impact and the lack of effective treatment.

Advancing research on this little-understood condition is critical. Toward this goal, the HER Foundation just funded the first-ever HG genome project at UCLA, led by Harvard-trained geneticist Dr. Marlena Fejzo, herself an HG survivor and a member of HER’s Advisory Board. Together, we want to share the reasons why HG awareness, education, and research is desperately needed:

FETAL HEALTH COST:

  • HG babies are at increased risk for low birth weight, small for gestational age, and preterm birth.
  • Prolonged nausea is associated with behavioral and learning problems in children.
  • In utero exposure to HG is linked to a 3.6-fold increased risk of emotional/behavioral disorders.
  • 15% of HG pregnancies are lost to therapeutic terminations, citing “no hope for relief,” and current treatments are not adequate to prevent termination of these planned, wanted pregnancies.

MATERNAL HEALTH COST:

  • Complications including retinal detachment, eardrum damage, loss of fingernails due to malnutrition, rib fractures, esophageal tears, and some deaths have been reported in the U.S. from HG complications.
  • Risk of Wernicke’s encephalopathy, a neurological syndrome caused by thiamine deficiency in HG pregnancies.
  • Complications such as dehydration pose a serious threat for mothers without access to immediate medical care, including low-income women and those in developing nations.
  • 18% of women report full criteria of post-traumatic stress disorder (PTSD) following an HG pregnancy.

ECONOMIC COST:

  • In 2009, the cost of inpatient treatment for HG in the U.S. was over $250,000,000.
  • Additional cost of 225,000 HG emergency department visits in the U.S. annually.
  • Costs for ER visits, home health care, and administration of more expensive treatments such as TPN and Zofran to treat HG are rising.
  • Time lost from work for both the HG mom and her partner, childcare costs for siblings during a mom’s HG pregnancy, and costs due to long-term maternal and child health problems may be significant.

It’s our hope that the Duchess of Cambridge’s high-profile pregnancy will help to raise awareness of HG among both the general public and the maternal-child health community. Research funding is needed to better understand the causes of HG and to develop more effective treatments. And thousands of women suffering from HG each year continue to need support, information, and compassion.

To learn more about HG, and to participate in or help fund HG research, please visit www.helpHER.org.

37 Responses to “Understanding Hyperemesis Gravidarum

  1. Debbie Hill says:

    It’s refreshing to see an article that truly describes how debilitating HG is. I have suffered with HG twice, the second time being the most severe where I suffered a life-threatening pulmonary embolism (blood clot on the lungs) due to the dehydration and immobility associated with HG. If only my medical team had taken more notice when I said how sick I was, the PE could have been prevented. I’m still traumatised by the whole experience, and feel that my pregnancy and early days with my baby were ruined by this horrid condition. Thinking of everyone suffering out there, and hoping that medical care will improve in the future so that women need not suffer that torture just to have a child.

  2. Carthlin says:

    Thank you so much for helping raise awareness for this debilitating condition. Furthering education and research means the world to us.

    -Mother of one, HG Survivor

  3. Angela McCormick says:

    I greatly appreciate your help in raising awareness for HG! The information from helpher.org has been a significant help to me during my pregnancies!
    ~Mother of three, HG Survivor

  4. Hillary says:

    Thank you for helping your blog readers to understand this condition. Lack of knowledge is one of the major issues that most of us HG survivors encountered during our illness. The sooner the disease is taken seriously be medical professionals and family and friends, the more effective the treatment. (Debbie’s story above is a perfect example). I am so hopeful that HG will start to be something better understood, and stories like this are a great start!

  5. Heather says:

    SO glad to see this hideous illness being highlighted. The physical and mental pain I endured for months on end during my pregnancy was just horrific, and still plagues me now, years later. It is such a debilitating and torturous condition, and as Carthlin says, furthering education and research is so, so, SO very important.

  6. Lindsey S. says:

    Thank you so much for shining a light on HG. As a mother if 3, and an HG survivor, it means the world to see this article on my social news feed. Thank you, Thank you, Thank you!

  7. Abra says:

    Thank you so much for bringing this accurate description to the public! One of the hardest parts of having HG is confronting the misunderstanding surrounding the severity of the situation while malnourished, dehydrated and overwhelmed.

  8. Erin B says:

    Thank you for so clearly stating what HG is and it’s horrible affects. My 1st pregnancy was HG. Instead of the joy and happiness my friends experienced I was scared and bedridden. I remember begging God to let me live long enough so that my baby could survive without me. Now I’m in the begining of my 2nd and begging God to let me be the 20%.

  9. Renu says:

    Thank you for taking the initiative. I suffered from HG for four months and in the 17 th week miscarried ( reason unknown ) I will keep on contributing to this website and promoting it.

  10. Rachel smith says:

    Great post. Thanks for helping spread awareness!

  11. Jennifer says:

    God bless you for publishing this thorough, articulate article….eleven years after having an HG pregnancy I still remember every wretched moment I spent, and thank God my daughter remains healthy and vibrant. I would piggyback on what the article says about moms with HG experiencing PTSD to say that HG moms also have a higher risk for Postpartum Depression. Keep up the good fight!!!

  12. fLo says:

    Thanks from France for this article.
    Too many people don’t have a clue on HG.
    Time for a change !
    Your help is more than welcome.

  13. Sheri says:

    Thank you for publishing this informative article. PICC lines, incredible isolation, minute by minute survival at a time all around just want to celebrate and want you to too – along with all that was described above demand that with the evolution in medical and technical advancements this hushed condition be tended to, Severe HG does not allow the Mom to reach out or advocate during pregnancy. I survived, have 2 awesome children, 10 years apart, and will do all that I can to support efforts, we need multi-pronged support -> medical, social, survivors, care-givers, community etc. The during and post impact to family is severe and dramatic. Thank you for helping to raise awareness!

  14. Jenny says:

    Although my one and only pregnancy had no complications such as HG, I have had experience with nausea, vomiting, diarrhea brought on by an allergic reaction to medicine prescribed for me. The dehydration caused my system to go into acute renal failure. It is a very scary thing and this article helped me see the similarity. Compassion, education and support are needed. Prayers for all who suffer from HG.

  15. Veronica says:

    Thank you so much for bringing awareness to HG. This is such a misunderstood illness and this article is perfect.
    Thank you thank you thank you

  16. Preemie Matters- January 2013 | NPIHC.org says:

    [...] Babies Coalition (HMHB) kicked off the New Year with a new blog post on a timely topic. “Understanding Hyperemesis Gravidarim (HG),” co-authored by Ann Marie King of the HER Foundation and UCLA genetics researcher Dr. [...]

  17. Brenda says:

    I feel relief that this wasn’t just in my head like everyone thought it was it’s so hard to try to explain myself to my own family that don’t believe me and think because am remnant I was taking advantage of this situation as of right now am pregnant with my 3rd baby my last two I had bad hg and am just hoping I don’t have it as bad as the last two I had it for 5 months with my son and 3 ms with my daughter. Knowing there is other women going through the same thing just let’s me feel I was right and it wasn’t in my head like everyone else thought thank you ladies!

  18. HER Foundation blogs with the National Healthy Mothers, Healthy Babies Coalition (HMHB) to raise awareness of HG | HER Foundation Blog says:

    [...] to National Healthy Mothers, Healthy Babies Coalition for inviting the HER Foundation to guest write for their monthly blog to help raise HG awareness! Click on our guest blog below and after reading, please be sure and [...]

  19. Lachanda says:

    I am having my third child 11+ years after having my first two kids. I guess I thought I would not experience HG, because this is a new marriage/hubby. Unfortunately, I am about 20 days away from my delivery datnd have suffered with HG the entire pregnancy for the third time.I am thankful for an article and/or advocate for this condition. Many didn’t understand itaIactdutmsoitreallycomplicated things when trying to get weleded bedrest or time off. My poor veins are so burned out from all the IV fluids and phernagan pumping through them. I just decided to hydrate myself as best I can, because I got tired of the mistreatment from docs/nurses frustrated with their frequent flyers. Unfortunately, I am dehydrated most of the time AN am now doing lab work to rule out preeclampsia or kidney or liver functioning properly .My swelling over my body is uncontrollable and out of hand It will all be worth while when my new arrival comes.

  20. Richard says:

    This perfectly describes my wife during our first pregnancy. She was miserable for the entire time, constantly naseous and vomitting. At no point did her doctor ever suggest it was anything beyond “morning sickness.”

    Is it possible to have this with only one pregnancy? With our second child, my wife did not have these symptoms.

  21. Ronnie Pate says:

    My Wife is currently in the hospital with this condition. This is our second pregnancy and child and yes, she had this condition the first time as well, but this time it is different in every respect. She is not responding well to treatments and will also probably cost her her job. This all happened so suddenly, one moment we are a family of three with our arrow point up and now everything seems incredibly catastrophic for our family. She is around 7 weeks pregnant and the next three months seem daunting. It is weird to see my strong Wife so weak and vulnerable, It is funny how time can skew things, but the first pregnancy even with this condition did not seem so bad, of course the variables are quite different including her age, but still it feels like our family has been hit by a hurricane. I am trying to stay strong, but I admit I am feeling pretty lost and scared..

    Sigh…

  22. Hayley M says:

    I suffered from HG after becoming pregnant at 18. The sickness was the worst I have ever experienced. HG can in no way, ever be compared to morning sickness. I lost 2 and a half stone within 2 weeks, I couldn’t eat, couldn’t drink, I couldn’t even swallow my own spit.
    It was exhausting, and turnt something that was supposed to be a positive into a negative. I sadly decided to terminate as the sickness was just too much for me to cope with, already being very light at 8 stone, 5 and a half stone was not an ideal body weight and I’m sure my baby would have had something wrong with it. I regret my decision every day, especially when I see articles like this, with such strong woman writing into to say they had HG and came out at the other side with a beautiful baby. I hope, for every womans sake, that they find better treatments and hopefully one day, a cure.
    No one should have to make the decision I did.
    Good luck to you all x

  23. Alice says:

    I too suffered with HG in my first pregnancy, I miscarried at 9 weeks after being sent home from the hospital for a third time.
    Not once was I offered IV drips or anything to help with my dehydration. I was prescribed pramin in a tablet form (what good is a tablet when you can’t even keep down your own saliva) I was disgusted with my treatment and made out to feel that something was wrong with me.
    Two years later I am 6 weeks pregnant and can feel the beginning of HG setting in again – however this time I am much more prepared and have the guidance of an excellent doctor.
    Awareness and education is the key! – Keep it up everyone.

  24. Joelle says:

    I wanna say, hats off to all you HG survivors! I haven’t been diagnosed with HG but I do have severe morning sickness, needing IV fluids and such with my first and current pregnancy. I feel at my ultimate low.. How anyone goes through worst than this is beyond me! Such strong ladies!!

  25. julia says:

    I am suffering with it now and it is very debilitating and hard to get through. The more support for sufferers the better :)

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  27. Advaidita says:

    I pray for all suffering from HG. I’m 52 now and had had 5 pregnancies. The first was well bearable after 3 months. The second was wonderfull. The 3th was very difficult, but due to bleedings I was in bed most of the time which made it easier to bear. At 24 weeks the baby was stillborn. Pregnancy 4 was difficult, 9 months sick sick sick, but somehow I made it trough…with medication, rest and eating all the time little bits even though everything tasted like cartonpaper. Pregnancy 5 was horror from the very beginning and I got so weak and skinny that I decided te terminate this pregnancy with great great sorrow…
    Now my daughter (from pregancy 4) is 17 years old and pregnant 7 weeks herself. And unfortunally she was hospitalised last week for dehydration from constant vomitting – she lost 5 kilo’s too. She is now home and i’m taking care of her with great understanding. Bying for her about everything that can possibly will stay in her stomach…worrying hoping and praying for her…and encouraging her that this will pass, even that the time is slowing down horribly with this illness and suffering. She had Emesafene medication, it did not do much. Now we try Vomex (from Germany) and we keep hoping……
    I read that HG is often transfered from mother to daughter (to the daughter that was born from a HG pregnancy) I’m so sorry for her and re-live my own horror.
    All prenant woman out there *** Hugs and Love and you all are in my prayers

  28. Chelsea says:

    It is so nice that their is an organization that is drawing attention to this disorder. I hope that research can and will be done. I am 17 weeks pregnant now and have been suffering from HG since the beginning of my pregnancy. I have been hospitalized several times and I am about to go home with home health because it is showing no sign of letting up anytime soon. It has been so challenging because the healthcare system is so flawed when it comes to understanding and treating HG. If it wasn’t for my persistence, I don’t know how I would get through this. I have already lost 30 pounds and I was only 125 pre-pregnancy so I didn’t have the weight to lose in the first place. I am ashamed to say that I was considering just terminating this pregnancy because it has been so hard on me physically and mentally. I’ve lost my job, my insurance, and it has been such a struggle. I just want to encourage all mothers who are battling with HG to hang in there, and be persistent. Do your own research and don’t take “no” for an answer. You are gonna have to be very proactive in your treatment because so little is known in how to treat HG. Good luck to you all and hopefully this condition will get more attention and relief will be on the way soon. I can say with certainty that this will be my first and last pregnancy because I can’t go through this again.

  29. Lyn says:

    Thanks for this article. I had HG on my first pregnancy and the whole first trimester I could not let anything down. Not even a sip of water. I was rushed to ER and was advised to get confined and get IV treatment but I refused to. It was so horrible. I am now again pregnant and was diagnosed again with HG. This time, it’s even worse. As much as hate getting IV drips, I had no other choice. I was vomiting around the clock. I am on my 13th week but I am still having severe nausea and vomiting. To make things even horrible, I am also having excessive salivation. I can’t eat and I can’t sleep.

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  33. Monica says:

    Glad I found this I have always thought that my doctors lack of knowledge and care had been the cause of my son’s learning disabilities, language delay and his adhd. He has so many therapists now that he is in school. It’s been a long hard road. Ive been so angry at my Dr for so long, but ive realized age simply may not have known what was going on and what she could do to help.

  34. f.mam says:

    I glad people r able to understand dis monster called HG… I hd Hg with two of my preganany… Blv u me its really a monster.. I hd to stay at home my entire pregnancy because i ws forever sick. I thank God because my family were very supportive until de last.. I ws always in n out of de Hospital… I need de third baby bt wen i think of HG it kills my desire

  35. Tricia says:

    I see a link between HG and Eve in the Garden of Eden. Women were not suppose to experience pain during birth, but due to Eve eating the apple from the Knowledge of good & evil, this was our punishment. Now, we murder millions of babies every year thru abortion, & I believe this is further punishment and it will only get worse if we don’t stop!

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  37. Vicki Wallace says:

    My niece has been vomiting since the day she fell pregnant, She is now 7wks and 1 Day .Vomits within half an hour of eating Has no energy, cant do her daily duties. Is depressed,and scared. I feel she has HG.I want to make her eat. What can I do ? She can’t hold water down. 25 yrs old first baby, help me help her. Please

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