Hope for Our Daughters
A call for awareness, education and research of hyperemesis gravidarum
My first pregnancy ended in miscarriage. I endured what felt like unusually intense nausea and vomiting for almost two months before we learned that I had lost the baby. Everyone, including my OB, had told me that my nausea was normal and a sign that the baby was healthy. After that first experience, I stopped listening to what anyone told me about pregnancies and decided to just take them as they come. But I didn’t know what had already come and what was coming again.
Six months later, my husband and I had moved to a new city for a fresh start and I had just run my fifth marathon. I was in great shape and ready to knock my second pregnancy out of the park. Little did I know that it was ready to knock me to my knees.
I remember the day I had to stop working because computer screens made me nauseous and start vomiting. I remember the day I started spitting into a small container, because swallowing my saliva made me vomit even more. I remember the day I had to stop teaching early morning seminary for my church, because getting out of bed became a real issue.
And then I remember not getting out of bed at all.
After that, I don’t remember any particular day because they all blended together. I stared out the windows of my room, listless and hopeless, cradling my vomit bowl. The only things I could eat were things that were easy to vomit back up. My husband tried giving me every fluid known to mankind, but they all tasted like dirt. In the end, I ate and drank whatever tasted the least horrible.
And it all came back up.
After a particularly terrible Christmas holiday spent on the phone with on-call doctors trying to figure out why none of the meds they’d prescribed were working, I woke to realize I couldn’t lift my arms off the bed. My body felt heavy and weighted down to the mattress. The last few days had been spent in a zombie-like state, wishing to die, wishing for my baby to die.
Even though I already knew what that was like.
We called my OB’s office and they admitted us to the hospital for IV hydration. I don’t remember much about that day, except that I wished I had been there sooner. Why had no one told me I could get hydrated at the hospital? Why had no one told me that if I kept throwing up my medication, I could take them intravenously? Everything was hazy and people were scurrying around in a blur. There were other unpleasant things that happened that day, but most importantly, I learned I had lost over 15 lbs and had dangerously low blood pressure. All of this meant I had something called hyperemesis gravidarum. I had never heard of it before.
Megan looked into my eyes as she said this and I could feel in my bones that she really did know what I was going through. I knew she knew because when she looked at me she had fear in her eyes and her body went rigid. She didn’t shrug off my experience like many others did, as if I was just being overdramatic or naive.
It was as though her body physically reacted to my own pain.
Later I would learn that it was hard for her to be around me at that time, because my condition triggered her PTSD. She came and talked to me anyway because she wanted me to know I wasn’t alone.
So many people had tried to relate to my experience of nausea and vomiting during pregnancy, but this was the first time I felt true empathy and validation. It was NOT regular pregnancy sickness and nothing close to normal. It was a disease and I wasn’t alone.
Some time after my son was born, Megan confided in me that she was going to have a third baby. She had two boys and both pregnancies had been horrific. She did not want to endure another HG pregnancy, but she knew this baby was supposed to come, so she began preparing and planning.
We met at a park and our kids ran around while we discussed how to survive HG. Our beautiful, innocent babies played while we discussed how to handle thoughts of suicide, wanting to terminate our pregnancies and who could be trusted to really be there when things got ugly. Because they would get ugly. That was inevitable and unavoidable.
There was always this small sliver of hope that maybe, just maybe the HG wouldn’t strike. But we both knew deep down that it would. And pretending that it wouldn’t wasn’t going to help anyone.
And so that year I watched in awe as she made preparations. Watched as she willingly chose to get pregnant again for the third time. Watched as the HG took over her pregnancy, her family and her social/emotional/mental life. She knew she could trust me to be there, to sit with her, to clean out her fridge, to sterilize everything with bleach, and to put all her food in closed containers. She knew I wouldn’t judge her for hiring a nanny or for only eating small bites of candy that day. Because she knew I knew that HG is a game of survival and anything goes.
Megan gave birth to a beautiful baby girl, her first and only daughter.
I gazed up at Stephanie in my doorway as I lie on the couch, my eyesight fading in and out of focus from dehydration and overwhelming nausea. After taking several years to recover from my son’s pregnancy, my husband and I decided to get pregnant again so our son could have a sibling. I had spent an intense year in PTSD therapy just to get myself to a place where I could think about getting pregnant again, but now I was realizing that none of that could help me now.
I was in deep again and wishing I’d never been born.
Roasted potatoes sounded terrible, but did she say ‘not come back up’? I hadn’t kept down a crumb of food or water in five straight days and my weight was dropping fast, so that part caught my attention. It had been a particularly terrible day, dry heaving nothing but stomach acid mixed with blood from my damaged esophagus. My ptyalism was in hyperdrive because of all the vomiting and at some point my spittoon got knocked over and gurgled saliva out all over the floor. I was in desperate need of distraction.
But wait, how could Stephanie be here again? Didn’t she have enough going on in her own life? I lived so far from her and yet, here she was, bringing me her special roasted potatoes.
The week before, Stephanie had sat on my couch with me, rubbing my dry and flaking feet with lotion as I whimpered out of exhaustion from the never-ending misery. I knew I could tell her how I was truly feeling because she knew what it was like to endure HG; she had lived through it FOUR times. I told her she was my superhero and I had no idea how anyone could survive that many HG pregnancies.
I told her this was it for us. I could NEVER do this again. It would kill me. It was killing me. She then confided in me that she and her husband were in the process of getting a divorce. My heart stopped. For a few moments, I forgot about how nauseous, dehydrated and hungry I was. How could this woman come and serve me in the middle of her divorce? Why? Why was she even here?
I could only imagine how lonely she was feeling in that moment. That day she emptied and cleaned out my spittoon, my vomit bowl and tidied up my kitchen. She would come many times and give everything she had to give, even though so much was being taken from her simultaneously. Her special roasted potatoes were the only thing I could eat for a couple of glorious days.
But eventually, those came back up too.
My third and last pregnancy would land me in the hospital for a week over my 32nd birthday, of which I have no recollection because I was on so many medications. My friends from church gave me rides to the hospital cancer unit 3X a week for months to get me IV hydration, meds and vitamins, because I was so drugged up and too weak to drive myself. The nurses at the unit knew me by name and weight and could tell the moment I walked in if I was doing well or not. I would eventually lose over 20 lbs (17% of my pre-pregnancy weight).
When my daughter arrived on May 11, 2018 at exactly 5pm, I thought my HG days were over for good. I had to spit saliva into my spittoon during the entire labor, but I didn’t care, because I knew it was all going to stop soon. My OB, my HG friends and even my own experience and research had told me that symptoms stop after the placenta comes out. And they did…for a good 18 hours.
When I started spitting and vomiting again the next day, I slipped into a state of complete shock. The celebration and joy I had hoped to experience at the end of my pregnancy evaporated into dank hospital air. I went home from the hospital with my baby girl on Mother’s Day, only to eat a piece of toast and vomit three times. My HG journey was not over and would continue intensely for another 6–8 weeks postpartum, with lesser symptoms lasting up until recently.
Even when I thought I knew everything there was to know about HG the third time around, it found new ways to knock me down.
Our stories reveal the power of HG. It has the power to pull women like Megan, Stephanie and me together and to motivate us to serve each other in extraordinary ways. It has the power to knit our souls together with stitches of pain and misery, but also validation and empathy. It has the power to turn veterans and survivors into passionate advocates of others’ suffering and misery, because so few really understand what it’s like and so few professionals know how to treat it.
HG also has the power to pull apart and destroy families. It has the power to wage war on relationships and wreak havoc on financial, emotional and mental stability. It has the power to influence family planning and stop relatives of HG women from even trying to get pregnant just out of pure fear.
Hyperemesis can cause miscarriage, dehydration, malnutrition, termination of wanted pregnancies, ketosis, muscle atrophy, esophageal tears, prenatal depression, anxiety, post traumatic stress syndrome and postpartum depression. And those are only the major concerns.
In addition to suffering physically from the trauma of HG, most women with the disease suffer mentally from social isolation and misunderstanding. Because we are physically unable to leave the house or our beds for sometimes months, very few people witness the brutal reality of the disease, clouding it in confusion and mystery. Pregnancy is also not something that everyone wants to share with others during the early stages and, as in my first pregnancy, it may end in miscarriage before a diagnosis can be made and information given.
Many women are also accused of being overdramatic and over-exaggerating their symptoms, causing sincere confusion and depression. For months I wondered why I couldn’t handle pregnancy like other women. I considered myself someone with a high tolerance for pain and generally a tough person who did hard things like run marathons and climb mountains, but I couldn’t do pregnancy.
There were times that I thought it was all in my head and that I was making it all up. That if I could just will myself to get out of bed, I would feel better. This of course, did nothing to ease my symptoms. In fact, most of the time it made it worse. Getting up and getting out is usually the last thing that HG needs.
Judgments and misinformed comments from others can make the mental weight of HG just as debilitating and painful as the physical weight.
Luckily, UCLA research studies on hyperemesis have recently made significant discoveries related to possible causes, heredity and recurrence. Studies in genetics have now found two genes, GDF15 and IGFBP7 that show signs of much higher levels of output in women with HG. This overproduction of protein during the building of the placenta may help researchers to narrow in on how to diagnose and treat the disease. These studies are incredibly validating for those of us who have been told on numerous occasions that our condition was mostly psychological. Because of funding and research, we are finally getting solid answers — it’s not in our heads, it’s in our genes!
With HG heritability as high as 73% and recurrence as high as 80%, those of us who have finally stepped out of the fog of our own HG pregnancies now look to the next generation. We can’t help but hope for better awareness, education and treatments in the future. After all, it will most likely be our daughters who will suffer if nothing is done.
With my daughter’s future weighing on my mind, I can’t help but admire the life work of Dr. Marlena Fejzo and her efforts to find a cure.
For our daughters, the countdown for a cure is already ticking. If more efforts are not made to increase awareness, education and funding for research, I will have to watch helplessly as my daughter suffers in the same way I did to bring children into the world. In an attempt to do my part, I sat down and made a list of all the things I could do to support Dr. Fejzo’s research. If you are looking for ways to take action, please consider the following and give our daughters hope!
Hope for Our Daughters
Research & References of Hope for Our Daughters|A&C Accounting And Tax Services
Source
0 Comments