Rare Disorder Turns Pregnancy Into Nightmare

By: Caroline Vandergriff Email
By: Caroline Vandergriff Email

When Justin and Angela Phelps learned they were expecting their first child, they were overjoyed. Then came the morning sickness.

"Starting at about 5 weeks, I started getting nauseous," said Angela, a nurse at Sparrow Hospital. "I thought it was normal morning sickness."

But it wasn't normal. Angela was diagnosed with a rare condition known as Hyperememis Gravidarum, which causes unrelenting nausea and vomiting. About 70 percent of all pregnant woman have morning sickness but in about 2 percent of those cases, the nausea never lets up, and the consequences can be devastating.

The most distressing part is just she can't do anything," said Dr. Robert Seiler, an OB/GYN surgeon at Okemos Womens Health, on patients with Hyperemesis. "She's incapacitated by her fetal nausea and she can't stop throwing up. And just from physically throwing up so many times, they can have things like esophageal tears, strokes."

Angela lost more than 10 percent of her body weight, and was eventually given a permanent IV for nutrition.

"It's very isolating," Angela explained. "Because you can't really do anything, you can't really see anybody, you can't really go out."

Hyperemesis took its toll not just emotionally and physically, but financially as well.

"I did lose my position at work," Angela said. "Luckily I was able to get a part-time position after she was born but still, I wasn't sure what was going to happen with that."

Now, she hopes to raise awareness about the disorder to help find a cure, and to make sure women get proper care. Some doctors dismiss Hyperemesis as a psychological issue, but experts say that's not the case.

"It's not a psychological issue," said Dr. Seiler. "It's definitely something physical that can't be controlled by psychotherapy or things like that."

Angela says she was lucky to have great doctors, and lucky her daughter Nina was born healthy.

"Even though it was an extremely hard 9 months, I would do it all over again tomorrow for her," Angela said. "It was worth it."

The cause of Hyperemesis Gravidarum is unknown, but researchers think there may be a link between the rapid increase in pregnancy hormones and the way some women's bodies respond to those changes. Newer research shows there might also be a genetic component.

Thousands of women with Hyperemesis are misdiagnosed each year. Many are told the constant vomiting and the malnutrition is simply morning sickness.

That's why the Hyperemesis Education and Research Foundation is asking people to sign an online petition urging lawmakers, researchers, and the medical community to take action and work to find a cure and a cause. We have the link the to the petition on WILX.com - all you have to do is click on the Hot Button.

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  • by Bridgett Location: Ludington, Mi on Dec 4, 2012 at 07:48 PM
    Well, well,.I had to wait until I'm 63 years old to find out that I wasn't having mental issues about my pregnant(which I knew was not the problem) My OB/GYN Doctor informed that was the cause of my sever vomiting. An appointment was made for me to be elevate by a Psychiatrist...I was humiliated to say the least..Now finally I find out what the real reason was..I can recall the horrid vomiting days as if they were yesterday. I experience several admits to the hospital...vomiting bile and blood..It was the most horrible experience I have ever endured...I delivered twins at twenty two weeks, my sons did not survive. Their umbilical cords had intertwined, braiding together. The doctor came into my room after the delivery holding a jar with liquid and part of my son's umbilical cord in it. He asked permission to keep the braided umbilical cord and stated "I think this is why you delivered early". What a doctor.. he wasn't! ...I was only sixteen, my husband was eighteen..we were devastated..I have lived with this guilt all these years..thinking that I was the one who cause my babies death..Only because of the Prince William's, wife pregnancy and reading this article after all these years...are my question answered and my burden of guilt removed...
  • by Jenny Location: Austin, MN on Aug 8, 2012 at 05:07 AM
    I had severe HD with my only pregnancy starting at 8 weeks, and lasting to almost 8 months. I lost about 40 pounds, had a Picc line, Zofran, and home health care, with 8 hours of daily drips for hydration and vitamins. I don't even remember how many times I was hospitalized. I also felt I was dying and never dreamed a baby could survive this. We were blessed with a healthy son. We would like to have another, but the relapse rate is terrifying. My heart aches for anyone who goes through this during what should be the most happy time of your life. I feel so lucky to have my son. I thank God for him every day.
    • reply
      by Janet on Sep 8, 2012 at 01:32 AM in reply to Jenny
      Wow, thank god for healthy babies for sure! This all sounds way too familiar, I too, was diagnosed with HG with our son almost 5 years ago (he is 4)... it is such an isolating and scary diagnosis, esp when very few healthcare professionals know what to do for you... I got to the point of being 7 weeks along, having been to the hospital for dehydration half a dozen times, lost almost 15 pounds, (throwing up on average about 10 times a day-closer to 20 in the first half- up until 8 months along when my son was born), having a PICC line in my arm, etc., I found a great high-risk dr. (in the Winfield, Il area if anyone is looking lol) that put me on a Zofran pump, and after losing my job, having to go on Cobra insurance and move back in with our parents, losing money on my home health care coupled with some friends/family members doubting your "illness" as psychological or just exaggerated morning sickness, etc... there didn't seem to be so many resources a few years ago, I have tried to raise awareness at least to everyone we have encountered, I kept a journal which helped, and working as a Peds. nurse, I just thank God for the healthy babies that come out of such a stressful situation for the entire family! I hate to put a negative light on pregnancy, but having HG was one of the most unpleasant and terrifying experiences of my life as I am sure many of you could say as well (minus getting a beautiful blessing of a baby out of it) :) We, too, would love to expand our family, and I would do it a hundred times over if I knew I would just be the sick one and no effect on the baby (uncertain), but we also now need to prepare a lot more financially for unexpected lost wages, home health care, etc. this time around...
  • by Tiffinnie Location: Sacramento, CA on Aug 7, 2012 at 08:31 AM
    I'm currently at the end of my pregnancy and didn't get real help until I was 13 weeks along... many trips to the ER with trash cans full of blood and bile, and lost 20lbs in less than 4 weeks... lost over 40lbs in the first trimester alone!! Finally they put a PICC line in me in May and I'm on a 24/7 saline pump with zofran injections as needed (thankfully as time goes on I seem to need the injections less and less... but no less than once a day EVER). My first doctor ignored me and fought with me through the whole thing and dropped me from care AFTER putting the order in for the PICC line, leaving me with a tube in my heart and no doctor to help me because he bad-mouthed me to all the doctors he worked with in the area... I finally found someone that would take me as her patient and has been monitoring me for a few months now, she is allowing me to keep the PICC line until birth and everything is going well as far as we can tell. I'm glad your daughter is healthy! Thank you so much for speaking up publicly about this disease, it needs more attention and acknowledgement (so people will stop dismissing us as crazy women with morning sickness)!
  • by lekeshia melton Location: mount croghan sc on Jul 21, 2012 at 02:45 PM
    I can totally agree I had HG with my first child and it was horrible I felt alone and helpless...I was sick for the first 7 in a half months...it took its toll on me physically emotionally financially..I couldn't eat anything nor drink anything my doctor at first didn't do anything even with me losing so much weight..I couldn't get straight answers from anybody.I tried to work but I spent most of my time in the bathroom or hospital which caused me to be terminated from my job..It was the worst first pregnancy experience...I love my son who is 6 now but the thought of having another pregnancy and going though that again scares me...it was so many times laying in the hospital bed I was afraid for my unborn child and myself..I am proud to see women stepping up and discussing this matter to educate the new mommy's...
  • by Jim Location: Wisconsin on Jun 29, 2012 at 02:33 PM
    My wife had this while pregnant with our twins. Admitted three times to the hospital and eventually had to put a tube down her nose into stomach to get "food". After she threw up the tube for a second time, we were almost out of options. Her OB just happened to speak to a cancer Dr and he suggested a patch he uses for his patients to get thru chemo. Within 24 hours she was eating normal food and felt great for the rest of the pregnancy...our twins were born without any issues and will turn three in September!
  • by Amber Location: Dewitt mi on Jun 27, 2012 at 08:26 AM
    I am in the second tri of my 3rd pregnancy. My second pregnancy I had the usual morning sickness and nausea, my first pregnancy I was diagnosed with HG. It was the SCARRIEST thing I have ever had to go through. I was in and out of the hospital with dehydration and exhaustion the whole nine months. I can't tell you how may ultra sounds I had to have to make sure baby was growing properly because my entire pregnancy I lost 35 lbs. I feel for ANYONE with this condition. And for other women who say sickness is part of pregnancy and to suck it up and what not, I say this. I'm so glad your pregnancy was so delightful with minimal morning sickness and sleepiness. I'm just glad I didn't have other children to take care of as I couldn't even take care of myself. If you think forgone second this is happening to you please tell your doctor.it is not mormal an you don't have to go through it.
    • reply
      by Janet on Sep 8, 2012 at 01:35 AM in reply to Amber
      So, you had HG horribly with the first but not the 2nd and 3rd?... looking for hope :) (my comment/story is in response to Jenny's I believe, above) Thank you for posting :)
  • by Janine Location: canada on Jun 23, 2012 at 09:26 AM
    Same scenario. I was so ill felt like I was dying. There was no sleep, no relief, I got to the point where I had trouble walking because I was so weak. All I would do was lay down all day and vomit. My doctor said "you'll be fine" so basically I had no support from anyone. I opted for an abortion which I don't regret at all. I just wish if I'ld of had the support from a physician or anybody for that matter of fact that I may be sitting here telling you about my beautiful child. I didn't even know this condition existed. It's just unfortunate. I am thinking of trying to get pregnant again but I am so beyond terrified now that I am not totally sure I should.
  • by Danielle Location: USA on Jun 20, 2012 at 09:56 AM
    2 things: Ananda, your comment leads me to believe that you did not have HG. I don't know anyone who has suffered with this terrible disease call it "annoying." HG is life threatening and it needs to be treated very carefully. Countless women have miscarried due to severe dehydration and malnutrition and some women have even died from complications (liver failure, kidney failure, etc). If all you needed to take was Zofran and found it merely ANNOYING, you did not have HG.
    • reply
      by Nikki on Jun 27, 2012 at 08:57 PM in reply to Danielle
      I agree with you Danielle. No woman who has ever had HG would call it "annoying". During my first pregnancy my ob/gyn didn't take my "morning sickness" seriously and after ~3-4 weeks of not eating, losing 10% of my body weight and throwing up the tiny bit of water from an ice cube, I was admitted to the hospital through the ER for severe dehydration & malnutrition and near kidney failure. Definitely not "annoying" but life-threatening. Needless to say before getting pregnant again I interviewed doctors for their HG protocol until I found one who knew what they were dealing with. Started aggressive treatment at wk 6 with a home IV and zofran pump. Now in week 26 I'm still nauseous, taking zofran pills, and fight every day to keep food down and still function at a FT job. There are two survivors during an HG pregnancy - a strong mama and a blessed child!
      • reply
        by Janet on Sep 8, 2012 at 01:37 AM in reply to Nikki
        first of all, your post was on my son's 4th birthday so I had to comment, I could not agree with you more and way to give it a second go!... we are in the scared and getting prepared stages... :) thank you
  • by Tiffany Location: Canada on Jun 20, 2012 at 09:03 AM
    I had HG with my first pregnancy..I was hospitalized nine times and put on Zofran, Maxeran, Diclectin and Gravol for most of my pregnancy. I lost 20 lbs the first month and was absolutely miserable, couldn't swallow my own spit some days without vomiting. There were many days I threw up so much that my stomach and throat would bleed and I would be throwing up blood and bile, so painful I thought I wouldn't survive or my baby wouldn't. Thankfully the symptoms lessened after 22 weeks and I wasn't hospitalized again until I went into labour..I still threw up right until I started to push but after I had the baby...miracle! sickness was gone! I ate a full meal that night and my baby girl was in perfect condition healthwise..I don't think I could have another child after going through what I went through for those nine months..it feels like you are dying and the medications sometimes don't work.
    • reply
      by Saira on Jun 20, 2012 at 11:22 PM in reply to Tiffany
      Tiffany, I'm from Canada too and was on the same medications as you. They absolutely did not help and I, too, felt like I was dying everyday.
    • reply
      by Janet on Sep 8, 2012 at 01:41 AM in reply to Tiffany
      Tiffany, I do not blame you at all for not wanting to go through it again after the first ordeal... I was throwing up as much as 20 times a day but I think only had blood when I got nose bleeds from a nasal spray they tried for the pain and nausea... there were a few meds. that I had allergic reactions to early on so we had to d/c them which just added to my sickness, etc.. (my story is above after Jenny's) I am just grateful as well for a healthy child! :)
  • by Amanda Location: Lansing on Jun 15, 2012 at 07:26 AM
    I had this with my second child. While it was annoying and uncomfortable, I never thought it was as dangerous as they say. Yeah, I lost weight, but I did in the first trimester with my first child too--and I didn't have any nausea! I tried all the tricks and old wives tales to get rid of the nausea, but the only thing that helped was a prescription anti-emetic. My dr. gave me Zofran and I ended up taking it throughout my entire pregnancy.
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