A couple days ago I saw this status update on the HER Foundation Facebook page:
“We have an HG sufferer in Jamaica in dire need of help, she is not receiving adequate medical care… telling her it is in her head and to just eat. She says she can’t take it much longer, so please if you know a doctor, nurse or survivor in the area please let us know!”
I sat stunned for a few moments. I wasn’t sure what to do. I wanted to scream. I wanted to cry. I wanted to fly to Jamaica and hold her hand and tell her it was not in her head. I wanted her doctors to never practice medicine again. I wanted to go back to 2003 and tell my frightened, sick, twenty-five year old self to change doctors and never look back…
The first time I took a pregnancy test was a Friday morning during summer vacation from teaching. My sister-in-law was coming to visit, and I wanted to know the result before she got there because I knew she’d be one of the first people we would tell. It was negative and I sat on the end of my bed and cried. Then I let it go. It was month one. This was normal.
We spent the day in DC, meeting my husband for dinner, walking past the White House, enjoying the gorgeous night. I felt queasy after dinner and blamed the charcoal grilled burger for the stomachache that didn’t seem to want to pass. The weekend ended, my sister-in-law left, my stomachache continued, and Monday morning arrived. And then for some reason, I took another pregnancy test.
It was positive.
That night we ate hot dogs and french fries to celebrate and I got sick. Very, very sick. The next night we ate spaghetti, and again I got sick. By the weekend we had cancelled our anniversary trip to New Orleans because I was too sick to travel. One week into my pregnancy I had lost 9.5 pounds.
We blamed it on whatever they put in hot dogs, we blamed it on the acid in the tomato sauce, we blamed it on a stomach bug. We blamed it on everything we could think of because my OB/GYN wasn’t doing anything to help. My family doctor ruled out everything she could think of. And yet the sickness continued and I was now only able to keep down water.
I called my obstetrician’s office in desperation, asking what I could do. I was scared for my pregnancy. Could it really okay to be this violently ill? I felt like my body was turning inside out. I couldn’t imagine a tiny collection of cells clinging to tissue and riding out the storm. And didn’t I need to digest food to live and support a growing life?
The secretary put me on hold for what seemed like forever and then turned me over to a woman named Phyllis whose voice will forever be in my head. I can picture her nine years later. Phyllis the Nurse Practitioner. I shared my concerns, the phone pressed to my ear, my body lying on the floor, begging the earth to stop moving for just a moment so I could find some peace. Just a moment of peace.
And that is when she said the words, “I’m looking at your chart and I can see that you have plenty of poundage. You don’t need to be worried about the weight loss.”
Poundage. Plenty of poundage. This is where I want to post pictures of me to prove that I was not morbidly obese, but instead was a typical twenty-five year old who had gained fifteen pounds or so in the first years of her marriage while enjoying life. I was about twenty-five pounds overweight. But even in telling you that I’m afraid I am also telling you this – that it is okay to dismiss the concerns of a sick woman because she has plenty of poundage. And that is not okay. So excuse me, but fuck what I weighed. I was sick. I was horribly, terrifyingly sick.
And it didn’t stop.
On good days I made it to work. Those days began with my husband bringing me water and something bland, often half a piece of Giant grocery store pound cake, because if I could get that down before I sat up, I stood a chance. If I had the energy, I showered. If I didn’t have the energy, my husband helped me. Just washing my hair was enough to require more rest before trying to put on make-up. After regaining the energy that bathing had depleted, I would sit in the bathroom and put on my make-up, then drive in the darkness to the school where I taught.
At first I tried to hide that I was pregnant…and sick. Seeing an obvious change in my appearance and not knowing what to say, co-workers would either look away or compliment me on my weight loss. At the point when most women are unable to button their jeans anymore, I was digging through old clothes for my skinny work pants, which still hung from my hips.
After surviving my day, taking the elevator to get from one floor of the school to the other, sitting next to an overhead projector to teach, I would go home and crawl in bed knowing that when my husband arrived later he would wake me up and help me eat white rice and drink some water. You know, so I wouldn’t die. That was the plan, the best we could do. My doctor dismissed my sickness as normal, and so there would be no bedrest, no time off from work. I had to keep trying my best to survive.
By the time I was done losing weight, I was down 30 pounds. My ribs stuck out. There was a cavity under them where I could stick my hand, nestle it in between my suddenly visible skeleton and the growing bump of my baby.
Thirty pounds. I am 5′ 3″ and there was a child inside of me. And I had lost thirty pounds.
So the bad days. On those horrible days, I couldn’t work. I couldn’t get dressed. I couldn’t get out of bed. I couldn’t function at all.
Standing up made me vomit. White rice made me vomit. Water made me vomit. Breathing made me vomit. It would go on for so long that the OB, still in complete denial, would give up and send me to the emergency room, my new home away from home, and I’d get my nearly weekly dose of fluids and the elixir of the gods, IV Zofran. Because no one seemed to understand why an otherwise healthy pregnant woman was wasting away, each visit to the ER would bring a new round of blood work. My arms looked like those of a seasoned IV drug user, and my veins had all but quit on me. One poor phlebotomy intern had to leave the room, unable to stomach what needed to be done to get just a little more blood for just one more test. Nurses would say things like, “Awww, first pregnancy? Poor thing.” And I wanted to knock them to the floor but only had enough energy to say, “Yes, first one.”
They checked my thyroid, my blood sugar, sent me to a GI doctor who warned that my kidneys would potentially be sustaining permanent damage from malnutrition and dehydration. He mentioned my liver. I tuned him out.
On Fridays I would try a new food to see if maybe I could digest it. New Food Friday. New Food Friday sent me to the hospital more than once, but at the very least ended with me in the bathroom for several hours, bowl in hand, sometimes thinking that this was no longer worth it. That it all just needed to end. Sometimes I prayed for it to all just end, my face pressed to the cool floor, lying naked so I could alternate between the toilet and the shower easily, my entire body shaking from pain.
The doctors told me to keep trying. Just eat. Just keep trying to eat.
I took Reglan and Phenergan and B12 and occasionally a little blue pill called Bentyl that gave me auditory hallucinations but stopped the spasms that would last for several hours and leave my body completely empty. I didn’t know until I gave birth that the pain of your entire GI system revolting against you is worse than labor. I know now.
Throughout my entire pregnancy my doctors alternated between dumbfounded and dismissive. They occasionally discussed the idea of inserting a PIC line in my chest to give my body more nutrition, and then they would change their minds again. After all, by the third trimester I was able to keep down cheese and bread and pretzels and the occasional Flintstones vitamin. Surely I was fine.
Except that when you are 32 weeks pregnant, malnourished, and dehydrated, you aren’t fine. In fact, you are the opposite of fine. You are terribly ill, and when you are terribly ill and your doctors fail you, bad things happen. So at 31 weeks when I knew something was wrong and called my completely inadequate doctor, I was dismissed once again. And 5 days later I gave birth to a 32 weeker who spent the first three weeks of her life in the hospital, unable to remember to breathe, unable to hold her body temperature, unable to eat without a feeding tube.
When the nurses weighed me upon my arrival to the maternity ward that day, I weighed 12 pounds less than I did on that Friday the summer before, the first day I took a pregnancy test. I gave birth, I went home, I pulled out my skinny jeans, and I began my daily commute to the NICU.
Hyperemisis Gravidarum - HG is a debilitating and potentially life-threatening pregnancy disease marked by rapid weight loss, malnutrition, and dehydration due to unrelenting nausea and/or vomiting with potential adverse consequences for the newborn(s). - HelpHer.org
No one should ever feel like they are not being heard when they are reaching out to the doctors in charge of their care. No one should suffer and be dismissed as weak, crazy, dramatic, unlucky. HG is real and it is devastating. In the months following my daughter’s birth, I scoured the internet trying to find answers. While the geneticists and neonatologists put my tiny baby through rounds of testing looking for answers, I found them on sites like the March of Dimes. She arrived early because she had to. She arrived early because her mother was horribly ill.
I was fortunate enough to find a new practice with a doctor who sat in silence when he heard my story, tears in his eyes at what the first practice had put all of us through. He looked me in the eye and in ink wrote across my chart in capital letters “HIGH RISK.” And he talked to me about HG. He understood. Yes, I suffered again with my son. This time they gave me Zofran throughout the pregnancy, not just in those beautiful moments in the ER, and sometimes it helped. There were also weeks and weeks of bedrest, family helping with my two year old daughter. I lost twenty pounds before the scale began to go the other direction, pushed on by the boy growing inside me. At 32 weeks he tried to come, but this new doctor stopped him. More bedrest. More sickness. And then at 38 weeks, he was here. Full term. That morning before I went into labor, I weighed myself. I weighed exactly what I had weighed the day of my pregnancy test with him. Somehow breaking even was a triumph.
This is hyperemisis gravidarum, and this story has to be told. For me. For my kids. For my incredible family who stood by me. For my husband who at twenty-five had to go from a newlywed to learning to care for a seemingly dying woman. For the kids I will never have because my body could not take this illness one more time.
And for that woman in Jamaica who I am praying has found the support that she needs to survive.