Expert: Hyperemesis Gravidarum Is Serious, Dangerous, And Definitely Genetic

Cute maternity outfits, idyllic weekends preparing a nursery, and nine months full of wonder at a growing baby bump were what I had in mind when I got pregnant. Then my body went full-LOL, bitch slapped me in the face, and quickly settled into a nightmarish new reality: I had hyperemesis gravidarum.

I thought Hyperemesis gravidarum (HG) was just morning sickness, but it’s the furthest thing from it. It’s a debilitating, dehumanizing, and potentially life threatening condition that takes over every aspect of a pregnant woman’s life, making it nearly impossible to work or function. And if one more person had recommended ginger candy or crackers I would have tap danced on their face with glee.

My new (miserable) normal was vomiting uncontrollably all day long — 15, 20, even 25 times a day — until the only thing coming up was bile and blood. My new normal were ruptured blood vessels in the eyes, body bruises from incessant vomiting, my husband carrying me to and from the bathroom, and hospitalizations. My new normal was starvation, complete dehydration, and paranoia every day that I would lose my baby. My new normal was hell on earth that lasted for 36 weeks.

Thankfully, HG has been a topic of conversation in pop culture for the last few years, with celebrities like Kate Middleton, Amber Rose, and Amy Schumer living out their misery publicly and making it easier for me to describe mine. Schumer in particular is a goddamn hero for the community — sharing videos of herself puking and multiple hospitalizations on social media. While Kate might be the most famous HG patient, Schumer has done more for visibility and awareness.

That awareness is key. According to the Hyperemesis Education and Research Foundation, nearly a third of all HG pregnancies end in miscarriage. And women who experience a severe form of HG can experience organ rupture, retinal detachment, blindness, eardrum and jaw damage, rib fractures, esophageal tears, the neurological syndrome Wernicke’s encephalopathy, or even death.

Having suffered with HG in two pregnancies, I was shocked at how little the public actually knew about the disease. So I reached out to Dr. Marlena Fejzo, associate researcher in the UCLA department of medicine and the department of obstetrics and gynecology at USC who has spent 19 years researching the condition and its inherent risks.

Ahead, I ask Fejzo what steps patients should take to cope with the condition, whether it’s genetic, and what, if anything, a woman can do to prevent HG before pregnancy.

Scary Mommy: First of all, I’m curious to know how you got into this particular topic? What motivated your interest and studies of HG?

Dr. Marlena Fejzo: I have always been interested in women’s health and after I lost a baby in the second trimester to HG and realized there was so little known about it, I decided to study HG.

SM: Why do some women get HG and others don’t?

MF: Evidence supports a strong genetic component to HG. Our recent study showed that the greatest genetic risk factors for HG are the placenta and appetite genes GDF15 and IGFBP7. I have also confirmed that genes coding for the receptor for the GDF15 hormone (GFRAL) and the progesterone receptor (PGR), are also associated with increasing the risk for HG. This means that if you carry the risk genes, you are significantly more likely to get HG, but they are common genetic variants, so there are many people who carry these variants who do not get HG and vise versa.

Other things must also be involved in addition to genetics that we do not understand yet. More importantly, these studies give us new pathways to focus on for therapies. For decades the focus has been primarily on the pregnancy hormone hCG, but surprisingly, we did not find any genetic variants in genes for hCG nor its receptor linked to HG. Our genetic study points us in a new and promising direction.

SM: What percentage of women in the states would you say experience the condition?

MF: It really depends on how you define HG, but estimates range between 0.3-10 percent of pregnancies. Approximately 20 percent of pregnant women are treated with ondansetron (Zofran) for nausea and vomiting in the U.S. — that’s a very high percentage of women prescribed medication for nausea and vomiting of pregnancy (NVP). What we do know is that emergency department visits are on the rise, with over 274,000 emergency department visits for nausea/vomiting of pregnancy in the US in 2014.

If you had a previous HG pregnancy, make sure to have a provider who is on the same page as you regarding a treatment plan and make sure to have support.

SM: What sets HG apart from typical morning sickness and how does a woman know if what she’s experiencing is normal or signs of HG?

MF: Generally, if you are unable to perform your normal daily routine and have lost over 5 percent of your pre-pregnancy weight due to prolonged nausea and/or vomiting, you should talk to your doctor.

SM: Are women suffering from HG at a higher risk for miscarriage?

MF: In our study, we found among 1555 women who did not have HG, 13 percent had a miscarriage. Among 771 women with HG who were not treated with ondansetron (Zofran), 32 percent had a miscarriage. But among 1070 women with HG who were treated with ondansetron (Zofran), 6 percent miscarried. So overall, in our hands, there is an increase of miscarriage in the HG group, but it may depend on treatment.

SM: When should a woman experiencing HG symptoms seek medical attention?

MF: When she has lost over 5 percent of her pre-pregnancy weight due to NVP and/or when she is unable to keep fluids down and is dehydrated and/or dizzy, or when she cannot keep down her prenatal vitamins and is unable to eat a balanced diet, especially containing thiamine-rich foods.

SM: Is there anything a woman can do to prevent or lessen the severity of HG before she gets pregnant?

MF: We do not know the answer to that yet. The only thing I recommend is if you have had a previous HG pregnancy, make sure ahead of time to have a provider who is on the same page as you regarding a treatment plan and make sure to have support, child care, and help with grocery shopping/cooking available in case you need it.

SM: Is HG a condition that can be passed down or is it not linked to genetics at all?

MF: Yes, in our studies one-third of women reported their mother had more severe nausea and vomiting of pregnancy or HG, and having a sister with HG results in a 17-fold increased risk of having it too. We also found evidence that it can come from the paternal side. So, if you had HG but don’t see it in your family, it may be that your father passed the genes on to you (and his father may have passed it on to him). Also, it is likely that a combination of genes and other factors all contribute to HG. Even though we know genes are involved, we still have a lot to learn.

SM: If a woman had HG during a previous pregnancy, is there anything she can do to prevent it in future ones?

MF: This is the big question! There is some preliminary evidence that treating preemptively lessens the severity, but more studies in this area need to be done to confirm this.

SM: What lifestyle, dietary, and physical adjustments should a woman make if she is diagnosed with HG?

MF: A woman with HG, by definition, is unable to continue with her daily routine or eat/drink normally due to severe nausea and/or vomiting. Therefore, she will need to rest, stay away from triggers which likely include the market and the kitchen, and get fluid, electrolyte, and nutritional support if she is unable to keep down enough fluids and nutrition. She may need supplementation with thiamin (Vitamin B1) if she is unable to take prenatal vitamins with thiamin and unable to keep down thiamin rich foods.

SM: As we saw with all three of Kate Middleton’s pregnancies, her HG symptoms subsided at the start of her second trimester. Amy Schumer, on the other hand, experienced debilitating nausea and vomiting well into her third. Why do the symptoms go away for some women and persist for others?

MF: We do not know the answer to this question yet. In our study we did find an IGFBP7 variant was associated with prolonged symptoms, but this needs to be confirmed by other studies.

SM: Are there any questions I should have asked but didn’t?

MF: Other advice I have is to get support from helpher.org, get an advocate to go with you on doctor’s appointments as you may feel too weak to advocate for yourself, and if you can, use our free iPhone app and share the report page with your doctor so they can get a better understanding of your symptoms between appointments and adjust care accordingly. The app has proven to improve communication and care in our beta testing.

If you are newly pregnant and would like to participate in a study to see if the app improves outcomes, please contact me at mfejzo@mednet.ucla.edu

This interview has been edited for style and length.

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