(istock)

Exhilarated screams sliced the air, drawing my glance up to the roller-coaster I had hoped wouldn’t capture my son’s attention, even though we’re at a theme park. I remember the delicious rush I savored as a kid who never met a coaster she didn’t like. No amount of cotton candy, fried dough or oversized rainbow-swirled lollipops was too much for my tastes, and I was able to hold it all down with a steel stomach during each hair-whipping spin, dramatic drop, or ride in reverse. There was a limit-pusher in me who was eager for the roller-coaster that promised to raise my adrenaline. Until now.

As if on cue, my boy tugged on my hand and begged, “Please? Just one ride?” I knew that no matter how much I wanted to buckle into a car together, and laugh-scream side-by-side, there was no way it could happen. Even the smallest of amusement park rides ricochets me into a vertigo that is startling in intensity, all because I wanted to give him a younger sibling.

Years earlier, when my son had just turned one, I woke up one morning feeling ill and thinking I had contracted a violent stomach bug. I began losing nearly a pound a day. I was repulsed by food and ached all over. I was becoming dehydrated.

After a few days, it dawned on me: I might be more than ill. It was still too early to show a positive result on a home test, but when I could barely get up to change my son’s diaper, my gut told me I was pregnant. And sick. I remembered a friend’s terrible experience with severe morning sickness and called her. She rattled off the main signs of hyperemesis gravidarum (or “HG”); I had them all. She told me to hang up and call my doctor. I was medicated within the day, confirmed my pregnancy within a couple of weeks and stayed on the medication until my daughter arrived nine months later.

But the damage lasted a lot longer than that.

The running joke in pop culture, on social media and probably throughout the history of pregnant womankind, is that pregnant women are likely to hilariously and dramatically throw up at any moment (cue the laugh track!). In real life, everyone expects a pregnant woman to feel sick at some point. It’s a normal part of the pregnancy package. But for many of us, the nausea and the vomiting are no laughing matter, not only as it’s happening, but also years later. I’m a decade past my first bout of HG and I still struggle with its lingering consequences.

These days a lot more people have heard of hyperemesis gravidarum, especially since Britain’s lovely Catherine, the Duchess of Cambridge, has been treated for it during her pregnancies. It is extreme morning sickness that can be dangerous to the mother and child. It can’t be kept at bay with crackers or seltzer or mind over matter. Most patients need medication to prevent relentless nausea and vomiting, many need IV fluids and hospitalization, and all have their lives disrupted in various ways.

Those of us who experience HG deal with the immediate effects while in survival mode. For me, that meant taking my days in small increments. I could manage a shot glass of very cold grape Gatorade every 45 minutes or so, and usually keep down food if I only ate around 2 p.m., when I was feeling my least nauseous. All of this was made more urgent by the fact that I had a toddler at home who required my care, and whose needs made it a whole lot trickier to manage potential hospitalization.

It took everything I had to manage my two most important tasks: keeping myself out of the hospital and my son cared for. Luckily we had a small apartment, so I could see him wherever he roamed from my spot on the couch. I learned the art of swallowing my vomit if I couldn’t physically make it to a sink or bathroom or trash can in time, in order to give myself one less job to do, one less mess to clean up, one less thing I had to expend my very limited energy on. I savored the few good days when I could leave the house. I tried not to dwell on the rest.

Like most others who’ve had HG, the day I delivered my baby girl was the day I was “cured.” This is what we are all told will happen, and it did. We are told that we can move on, and since (in most cases) we have a baby to care for, we get busy with that. What the doctors don’t tell us is that soon we’d realize the extent of the damage HG left in its wake — physically, financially and emotionally.

Hyperemesis gravidarum, and the treatment of it, can cause a range of damage. The women I spoke to for this article experienced ruptured capillaries, dental deterioration, esophageal injury, hemorrhoids, anal fissures, infections, loss of muscle, vitamin deficiencies and other issues. Like me, many of them are years past HG, but still haven’t been able to leave it all behind.

Andrea of Maplewood, N.J., had HG during both of her pregnancies. On top of multiple hospitalizations, she also dealt with getting IVs at home and having to be fed through a sort of catheter that remains in the body to deliver medicines. That caused a blood infection and clot. She also got a bacterial infection while she was in the hospital, and that lingered for months after the birth of her second daughter. She had to take many medications to treat the vomiting and the infections. Managing a toddler and a newborn is hard work. Tack on major gastronomic issues and a body worn down by almost a year of malnutrition and fighting off all the ailments caused by HG, and it’s nearly impossible.

Heidi of Jackson, Mississippi, had her second child more than four years ago and still is dealing with the damage from HG, including a torn esophagus from extreme vomiting.

As for me, the combination of the medication I took and the limited food I could tolerate caused relentless constipation, which resulted in hemorrhoids and fissures only surgery could fix. I spent years being awakened at night by the pain, living with constant discomfort. It took five years and two medical procedures to return to normal after I delivered my daughter.

In addition to the lingering physical issues, paying for the treatment of the effects of HG and having no choice but to stop work during pregnancy is a financial double-whammy. Sandra of Chicago was a registered nurse with a pregnancy plan to work as long as she could so that taking time off once she delivered would be less of a financial hardship. When she became pregnant with twins, HG kicked in and she began retching 50 times a day. “I missed a lot of work. … I’d been saving for maternity leave but used almost all of it in my early pregnancy. … I ended up having to use FMLA, all unpaid.”

Some even lose their jobs as a result. “With my second child, I was fired for ‘abandoning my job’ while [I was] in the ICU,” says Heidi of Jackson, Mississippi. “We had to withdraw my first child from his private school and were completely broke.”

It is hard to explain how bad the situation is — people are so used to the sitcom version of morning sickness that they can’t understand the reality of living with HG or recovering from it. Add to that sense of feeling marginalized and having your experience minimalized by people who don’t understand how much of your life HG can ravage in nine months or less, with the reality that these women had no extra energy to keep relationships afloat — no matter how important those relationships were to them.

“I became very depressed, felt very isolated and began to resent the people who failed to understand,” says Lisa, who lives in London. “I was away from my home and my husband for weeks and my parents and in-laws had to share the care of my daughter. … I also forgot I was pregnant most of the time and couldn’t feel happy about it. I was just counting the days and trying to survive each one.” She had guilt, too, over being unable to care for her daughter and over needing to move in with her own mom because her husband couldn’t take time off to care for her. There was no opportunity for them, as a family of three, to celebrate the pregnancy. The family was broken apart for most of the pregnancy.

Kristin of Austin had just moved to a new city with her husband when her HG kicked in at the start of her pregnancy. They had not yet made friends in their new city and relied on each other for company, but she couldn’t stand to be near her husband when he even slightly smelled of food or coffee, so she had to keep him at arm’s length. “My husband revealed to me later that it was a very lonely time for him.”

Resentment over being unable to enjoy pregnancy, anxiety over whether the medication needed to manage HG could have some effects on the baby, worry over the distance between them and their husbands, loss of trust in doctors, feelings of loss, upset at the knowledge that their dreams of a big family will likely never happen, and overwhelming depression are all valid, but when can these new mothers find the time to see doctors, specialists and therapists and try to heal? How many of these women had well-meaning loved ones who advised them to move on, not dwell on physical discomforts, be grateful that it’s over, for there is now a beautiful baby here to focus energy on? Where is the message acknowledging the emotional trauma these women suffered, encouraging them to get help, assisting with the logistics so they can?

While those of us who have been through it can appreciate that more people are becoming familiar with how serious hyperemesis gravidarum is, our hope is that women who might be dealing with HG now know that they are not alone, and there will be support for them for as many years as it takes to recover physically, financially and emotionally. We want medical professionals to educate themselves on the many layers of HG’s side effects, and work with their patients to ensure they get proper treatment during and after. We want all women who deliver babies to then tell their loved ones they need their help to recover from HG, and acknowledge that some of those loved ones might need to recover, too. It took me years to get everything I needed, but no matter how it takes for us to heal, it is possible for us to move on.

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Back at the theme park, my son was waiting for my answer. But he knew that the last time I tried a carousel, I was dizzy and sick for the rest of day, all plans cancelled while I sat in a dark room hoping to get my footing back.

“I’m sorry, sweetheart. You know I can’t do them anymore. But what I can do is fill you and your sister up on cotton candy, fried dough, and lollipops, then hit every other activity in this place for as long as you want. Would that do?”

He smiled. “Can I have a burger and a slushy, too?”

I laughed and nodded, taking his hand as we moved on to whatever new adventures we could find — and do — together.

Get more information on hyperemesis gravidarum at HelpHer.org.

Kim Bongiorno is a freelance writer, author, and blogger based in New Jersey. Find her at letmestartbysayingblog.com.

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