When it’s not all in your head: Hyperemesis gravidarum

Today, May 15, is Hyperemesis Gravidarum (HG) Awareness Day and this is my HG story.

In my first pregnancy, I kept saying to my gynecologist, “I think I’m really throwing up a lot,” and he kept telling me that it’s normal don’t concentrate on it, eat something when you first wake up and it will go away. I kept feeling really ill and had to go to the hospital regularly for IVs. Everyone had tips for me to make it better: drink ginger tea; pressure points; there’s nausea bracelets; I even had someone bring Saltines from America so I could eat them.

By the time I had lost 17 kilos (37.4 pounds) and weighed 45 kilos (99 pounds) total he finally acknowledged that maybe it wasn’t just normal morning sickness. I was five months pregnant by then, and they switched me to a high-risk obstetrician who recognized immediately that I had HG and began trying to to find the right medication for me, while she continuously implied it was in my head. During this time, I dropped one more kilo, bringing my weight down to 44 kilos (almost 97 pounds) I’m 5 feet 6 inches (1.67 meters) tall and strangers on the street would comment that I looked like a Holocaust survivor and I should eat. No one could tell I was pregnant. Eventually we found the right combination and I walked into the hospital to give birth at the exact same weight I was before the pregnancy.

Maayan Alisa was born at week 41+6 days and I threw up through most of the labor. Doctors doubted that I would have the strength to make it through the labor and kept pushing me to do a C-section. I would have done it, but I couldn’t imagine being that weak, recovering from a major surgery, and having a newborn. After the birth, I weighed less than I started the pregnancy at by 10 kilos (22 pounds.)

For a lot of women, hyperemesis gets worse with every pregnancy, so the three miscarriages I had right around 12 weeks each really made my fifth pregnancy that much worse. Even though I was so much sicker, I also had much more information at my disposal, thanks to the organizations Beyond Morning Sickness and HelpHER.

I began throwing up before I could have a positive pregnancy test and immediately started on the medication, I took Zofran (what they give to chemo patients) and Zantac, which makes the Zofran more powerful. My GP upped me to the maximum dose I could take while pregnant, and I was getting IVs several times a week. (thank you Adina Strasberg, David Tanami, Pam Gelber, and Noa Choritz, who came to my house and gave me IVs at home), but still by week 9 of the pregnancy, I had to be admitted to the hospital. I had an HG symptom called “bloodhound nose” — I could smell so well that I knew from the smell of hormones on a women whether she was pregnant or in menopause. The smells in the hospital were so overwhelming that I actually got worst. At first, they didn’t want to release me until I could keep two cups of liquids down each day, but then a lovely professor, who really understood HG, convinced them that I need to be sent home with nursing care there. To think I also had an almost-3-year-old waiting for me at home.

At home, I created a low odor room, was getting my medication delivered to the house, all my meds by IV, and I had a nurse moving my IV several times a week. But then the worse thing that could happen in my situation happened: I started to have IV-rejection. Every time an IV was put in my arm, I would get a horrible rash and my vein would blow, swelling the spot up to where it looked like there was a golf ball under my skin. I was at week 17, and I was pretty sure based on all the information I had received that if I could just make it to week 20, I would probably have good window till week 30, based on my first pregnancy. It was hard, but I did it. From weeks 20 to 30, the medication was enough, but from week 30, it came back with a vengeance. I was told I would have a C-section at week 38. I started to have liver failure from lack of nutrients sometime around week 33, and had to change obstetricians, after the one I’d been seeing asked me if I really needed the meds and couldn’t I just get over it.

From week 36, I started acupuncture, pressure points, and tons of evening primrose oil to try to get me to labor (thank you Sara Gorden-Levine). The night I reached week 38, just past midnight, I started bleeding. My amazing doula (Amanda Goldman) picked me up from my house and drove me to the hospital. I had placental abruption, but this bump was actually a blessing in disguise: as they were prepping a room for a C-section, my body expelled the baby, which happens in some cases of placental abruption. I hadn’t even been at the hospital for an hour when, with the help of my doula, Sophia Zemira was born. I was so weak that my husband had to physically hold me upright during the labor, I wasn’t able to hold my upper body up.

They never tell women with HG this, probably so we don’t get so beaten down that we give up, but you can have HG after birth. I had it for three more weeks.

In order to pay me back for what I went through, my daughters will be the presidents and concert level musicians, perhaps also write new math formulas, each. I deserve it.

My heart goes out to my hyperemesis sisters, especially those in countries like the United States, without access to good healthcare. My case was severe, but that doesn’t lessen the horribleness of any women suffering form HG. Hyperemesis gravidarum is described as throwing up that causes a woman to lose at least five percent of her body weight. Also, a number of women get a lighter shade of HG, where they have debilitating nausea.

And lastly, some food for thought: until 1995, most medical textbooks said that HG was a mental illness. 1995 was the last year women in America and England died from HG. Any doctor or nurse who started their degrees before 1995, and many who started after, learned that HG is a mental illness and that, eventually, if the woman wants to, she’ll stop throwing up.

A little education goes a long way, and saves lots of lives.