Hyperemesis gravidarum (HG) is a rare disorder characterized by severe nausea and vomiting in pregnancy. It is a complex physiological disease that I suffered through not once, but twice, and I still have the emotional battle scars to show for it.
MY FIRST PREGNANCY
About two weeks into my pregnancy, I started to feel nauseous. Soon, I was unable to eat almost anything except for maybe a popsicle and some oatmeal without milk. Then the vomiting started. I asked my doctor for help and he basically told me I was overreacting and that I should “suck it up.” As if it were all in my head. Having never been pregnant before, I assumed this is what morning sickness was like for some women.
I tried crackers, ginger chews, seasickness wristbands — the cheap ones as well as the $100 ones — pregnancy lollipops to fight nausea, papaya juice… you name it, I tried it. Despite my fear of needles, I tried acupuncture, then acupressure, and even hypnotherapy. But nothing eased my nausea and vomiting.
A friend said, “But don’t you feel so much better after you’ve vomited?” I didn’t. This wasn’t the flu or food poisoning. This nausea never went away.
As my symptoms worsened, my gynecologist diagnosed me with Hyperemesis Gravidarum. She started to watch me like a hawk and had me come into her office on a weekly basis. Throughout my pregnancy, she assured me that my baby was fine — the hormones that were making me sick were actually helping the baby thrive. The sicker I was, the healthier my baby was. Reassuring as this was, I just kept getting sicker and sicker and found it increasingly hard just to function. I lost 16 pounds in my first trimester. I was 5’ 6” and 98 lbs. Downy “fur” started to grow on my legs. My ketones indicated that I was dehydrated and starving. That’s when my doctor put me on Reglan. This medicine, an anti-emetic, was given to me through a pump infusion in my leg. The location of the IV needed to be moved every three days because the site would become swollen, red and itchy. Before long, my legs were covered with welts. Even with the medicine, it was difficult to eat. I had a home nurse come to the house every week to check my ketones, my blood, and my medicine.
“Do you even want this baby?” — From the (male) electrician helping with our baby room
Before I got pregnant, I had a plan. I was going to eat only super-healthy, organic foods. I would exercise daily with pregnancy tapes. Instead, I found myself able to eat only oatmeal, Jell-O, popsicles and one particular Jamba Juice shake. I was forbidden from exercising because my doctor didn’t want me burning calories. I was concerned that I was unable to eat healthy food. My doctor assured me that she had teenage patients who subsisted on macaroni and cheese and Diet Coke and their babies turned out fine. She told me, “Your baby will get the nutrients he needs, even if he has to take it from your bones.”
All through pregnancy, I had heightened, overwhelming anxiety that caused me to have hallucinations that I was surrounded by spirits protecting me. I remember lying on the couch, so sick that I was unable to even watch TV or listen to it. I would lie there for hours and then look at the clock and see that only one minute had passed. I bought meditation tapes in an attempt to calm my mind, but I felt like I was crawling out of my skin. I didn’t know what was wrong with me. Later, months after my baby was born, I discovered that one of the side effects of Reglan is profound anxiety. Once the Reglan was out of my system, the anxiety went away.
Smells were the worst. I smelled things that no one else could smell.
I could smell pheromones wafting off of other people. I couldn’t stand the smell of my own husband and it had nothing to do with hygiene. I could smell if a product was expired. I couldn’t use toothpaste because of the smell and taste. I had to switch to fragrance-free shampoo and conditioner, which still had an odor to me — I think I was smelling the ingredients. I would joke that I had developed a “dog’s nose.”
I resorted to wearing nose plugs, the kind swimmers wear, in an attempt to block the many smells that bombarded me wherever I went. When I went to my ob/gyn appointments wearing my nose plugs, others in the waiting room would stare at me. I’m sure I looked like a freak. At home, I tried walking around holding a lemon under my nose (I’d read somewhere that that worked) but it didn’t help. I wore a nose plug at all times, even to Jamba Juice.
Well-meaning friends would ask me, “What would happen if you tried to eat something you think you can’t eat?” It would come up, that’s what would happen. And the vomiting was so violent (and often bloody) that when I puked, I would pee my pants (or worse). Soon, when I vomited, I would need to have my head in the sink while sitting on the toilet at the same time.
MY SECOND PREGNANCY
Although I had vowed to never be pregnant again, I felt like our family was incomplete. We could not afford a gestational carrier, which would’ve been ideal — my own fertilized egg carried by someone else. But then my doctor told me there was a new medicine that would help me: Zofran, which dissolves on the tongue. No more anxiety-causing Reglan and itchy welts on my legs.
Well-meaning friends said things like, “It’ll be different this time because your body knows what it’s doing.”
Well, this time was worse. I don’t know if it’s because I was having a girl and there was more estrogen in my body, but I started to get sick very early on. And I had a toddler to take care of. I was working on an animated TV show, but soon I was too sick to go in to story sessions and had to quit.
This time, I couldn’t eat oatmeal or popsicles or Jell-O. I couldn’t keep down prenatal vitamins. I could barely swallow my own spit. The Zofran which dissolves on the tongue tasted TERRIBLE! And it didn’t work! I was brought to the hospital to have a PICC line (Peripherally Inserted Central Catheter) positioned in a large vein in my chest, just above my heart. This would allow me to receive 24- hour IV tube-feeding, or TPN (Total Parenteral Nutrition), which bypasses the gastrointestinal tract when a person cannot eat or drink.
Because it was all I could do to just function, my parents, who lived across the country, flew out to help care for my son. While my husband was picking them up from the airport, I woke up to a pool of blood coming out of my arm. I was terrified. I called 911 and the operator was rude to me. He told me to “calm down” and was not sympathetic at all. When the ambulance arrived, the paramedics grabbed my son from his crib and put him in the back of the ambulance with me. He loved vehicles, so I tried to hide my fear and make it seem like we were going on an exciting adventure.
When we arrived at the hospital, I looked out the back of the ambulance and saw my ob/gyn walking by. What a stroke of luck! I had the paramedics call her over. She took my son with her to her office where the staff would look after him while my PICC line, which had been put in wrong, was fixed.
Throughout this pregnancy, I walked around with an IV pole or a specially-designed backpack in which I could carry my IV along with me. Because I was not consuming any food or liquid, I stopped having bowel movements. I was constantly starving. Nutrients were being pumped into my veins, but not my stomach, which grumbled and ached for food. I liked food, I just couldn’t eat it. Without the meds and the IV nutrition, I’m sure I would’ve died, and my baby would have, too. My home nurse brought me boxes of Saltines, Nilla Wafers and bland crackers. This made me angry. I didn’t have “typical” nausea. I wasn’t being stubborn and I didn’t have an eating disorder — I just COULD NOT EAT.
When my parents and my husband ate dinner downstairs or brewed coffee, I would vomit. They never turned on a stove or microwave. They learned to eat cold foods that didn’t emit smells the same way and stopped making coffee in the house. But I could still smell their food and would violently vomit every time they ate.
“I’m so sick of you women complaining all the time! You need to stop being so weak! Men would never complain the way you women do.” — From the chiropractor who yelled at me after I told him I felt nauseous.
The second time around, I wasn’t a skinny twig. In preparation for nausea, I had intentionally put on weight before I got pregnant. But I didn’t lose that weight at all because the TPN was filling my body with over 2,000 calories a day of liquid. I sloshed around with my big belly and quickly outgrew the maternity clothes from my first pregnancy.
Every day, I needed to inject my TPN bag with various meds and vitamins. It was complicated. It wasn’t until months later that I discovered that I hadn’t been preparing the tubing properly; I wasn’t getting the air out of the tube before connecting it to the TPN. If an air bubble had gotten trapped in my tubing and gone into my blood stream that could’ve been the end of me.
Because I wasn’t supposed to get the PICC line site wet, I needed help bathing. My husband would often help me. One time my mother was helping me when the Saran Wrap I’d used to wrap around my tubing (to protect it from water) got tangled. I asked her to help me cut it off. I don’t know if I moved or if she was nervous and panicked, but she accidentally cut my tubing and blood started spurting out. Thankfully, my home nurse was on her way, so no harm was done, though my mom and I were quite shaken from this incident.
Many times during my pregnancy, I would ask my doctor, “Am I going to die?” She would look me in the eye and say, “Would I let you die?” Which wasn’t really an answer.
My nurse told me about another patient who was hospitalized for her hyperemesis. I felt sorry for her — she must have it so much worse than me. The nurse said no, I had a more severe case, but I had a better support system at home. My nurse also told me stories of women who did not have comprehensive insurance so they went without good care or medicine (at the time, Zofran was $50 a pill) and now their internal organs were permanently and irreversibly damaged.
This was a scary time for me, but it helped to keep things in perspective. While I was struggling with my pregnancy, my husband’s brother was also walking around with a tube sticking out of his arm because he was in the end stages of cancer. We would sit around commiserate about our PICC lines. Being with him made me realize that as horrible as I felt, while he was dying, I was creating a life.
Throughout both pregnancies, a lifeline for me was the (Hyperemesis Education & Research), which I was lucky enough to discover online. Women who had been through hyperemetic pregnancies were there to talk to me, assure me, and listen to me. They offered support, kindness and never judgment. They gave me hope and helped me believe that I could stick it out. The co-founder of HER, Kimber MacGibbon, was calm and compassionate. I knew if she had been able to get through it, I could, too.
WHAT I LEARNED
I had to learn to forgive myself for not eating all the healthy food I had intended on eating during my pregnancy and just do the best I could do. Late in my second pregnancy, I suddenly felt like I could eat something. And that something was mac and cheese. I told my husband and he dropped everything and went out and got it. My sister said, “Why would you want to eat something so greasy? Why not something bland?” But again, my nausea was caused by hormones, not sickness, so bland food wasn’t the answer. Soon I was able to eat fruit, which I craved. I also craved dairy, perhaps in response to my body getting ready to lactate. I always craved dairy when I was nursing — I even dreamed of drinking milk shakes. But food did not taste the way it should. Chocolate didn’t taste right, but I kept trying it, hoping it would again someday. I could not eat fish, chicken or salad. Lettuce was like eating metal.
When I was at my sickest, my sister would remind me, “Remember, you get a prize in the end!” And it’s true. I have two great kids. My son is 15 and my daughter will be 12 in a few weeks. And although they were worth what I went through, I still feel traumatized by my pregnancies. I suppose I will always have a bit of post-traumatic stress syndrome. I still smell odors that no one else does, particularly pheromones… but at least chocolate tastes good again.
I am an incredibly strong person to survive Hyperemesis Gravidarum. My doctor told me about patients of hers who had terminated wanted pregnancies because their HG was just too unbearable. The fact that I came through HG not once, but twice, is something I remind myself whenever I face a challenge in life. If I could get through those pregnancies, I can get through anything.
Have you or someone you know experienced Hyperemesis?