Severe complications

“I kept thinking, am I going to die?” Am I going to starve to death?”

This is Raynie Andrewsen’s story of surviving a rare but painful and very life-threatening disease that affects pregnant women: hyperemesis gravidarum, or HG. It’s experienced in roughly 4 out of every 1,000 pregnancies. In the wake of her horrific experiences, Andrewsen has dedicated herself to spreading the word about HG, participating in finding a cause and providing support and understanding to other women affected by the disease.

Slow-motion emergency
Hyperemesis gravidarum, put simply, is morning sickness to a debilitating extreme. Morning sickness—vomiting and nausea induced by pregnancy—occurs in more than 50 percent of pregnancies; it’s common. But in the case of HG, the vomiting doesn’t stop, sometimes for months.

“It’s like having the worst food poisoning or stomach flu you could imagine, constantly, every waking moment,” said one HG sufferer in a recent NBC News report. There is no known cause, and there is no cure for HG. There is only treatment of the symptoms. If treatment is not readily available—and sometimes even when it is—the mother, fetus, or both are at risk of death. Even with care, complications can arise—as Andrewsen experienced. And even with care for the complications, the journey of pregnancy, one that many mothers-to-be look to as a time of joy, is dominated by fear, pain, depression, fatigue, mounting bills and debilitation. It’s a journey of suffering. Currently, there are only two ways to return to normalcy: Suffer it out, or terminate the pregnancy.

Andrewsen was 35 when she got pregnant. The father is a boyfriend she had known in high school with whom she’d later rekindled relations. He lived on the East Coast, she in Sparks. After a visit, Andrewsen learned of the pregnancy. Even without the support of the father—over time he completely opted out of taking on the role—she decided to become a single mom. She was secure at her job as a pit boss at the Reno Hilton (now Grand Sierra Resort). The company was supportive and helpful. Andrewsen was excited and determined to make it work.

Then, roughly a month into the pregnancy, Andrewsen started feeling ill. The sickness, nausea and excessive vomiting carried on for days. She couldn’t go to work. She could barely get out of bed. Within a week, she ended up in the emergency room, the first of many frightening dashes she’d make to the hospital in the coming months. She was administered two bags of fluids and returned home. Feeling better, she managed to consume two crackers and some water. But she was soon back in the emergency room and diagnosed with HG.

A turn for the worse
It was becoming clear that Andrewsen’s condition was severe. Dire. She was getting to the point of not being able to take care of even her most basic needs.

“I had to shower sitting down. It was that tiring for me,” Andrewsen says. “I couldn’t stand. I couldn’t walk. I was used to hiking six miles every day, and now I needed help just to dress myself. I was too tired to even brush my hair.”

Andrewsen realized she needed constant help, so she decided to stay with her mother in Southern California. It took her two attempts to make the flight, so advanced was her weakened condition. By this time, despite the generosity of the Hilton, Andrewsen, unclear about when she’d be able to work again, had reluctantly quit her job. Within a day of arriving in California, Andrewsen was rushed to the emergency room via ambulance. Her potassium levels were so low, her heart was at risk. She was admitted to the hospital for two days. She would be in and out of the hospital for several months. Even when not in the hospital, she was bedridden for much of her pregnancy.

Andrewsen became so in need of intravenous nutrition that a peripherally inserted central catheter, or PICC line, eventually was inserted into her arm so nutrition could be more easily administered. Her family was taught how to use the IV which allowed her time away from the hospital.

This was not to last for long. Soon, blood clots formed where the PICC line had been inserted; it had to be removed. The only nutrition Andrewsen could now receive was that which she could keep down. On top of that, to dissolve the life-threatening blood clots, she had to administer a shot of blood thinner into her stomach every day for the following three months.

From this period of her journey, Andrewsen writes in her now-published journal/book about the experience, Letters to Zane: “I am withering away. My muscles are wasting away, and my hair is falling out!”

Treading water
Through much of her pregnancy, Andrewsen recalls being depressed and being stressed about her medical expenses. “This is a very expensive disease to treat,” she says. Her throat was torn up from the vomiting, she was paranoid about how the drugs she was using could adversely affect her baby, and her stomach was sore from the daily shots she had to give herself.

More trips to the hospital, more life threatening concerns about blood clots. The only way to make it stop: Terminate the pregnancy. On this Andrewsen was firm: No.

By month five, around Thanksgiving, she was able to eat but still couldn’t consistently keep food down. The excessive vomiting would come and go for the rest of the pregnancy. Miraculously, the fetus was in good condition throughout—a surprisingly common occurrence with HG pregnancies.

After months of suffering, Andrewsen gave birth to healthy baby Zane. He is now 9 months old.

Though the symptoms of HG are gone, problems linger. Andrewsen can barely manage to walk one mile, and when she does, her joints hurt badly.

Throughout her ordeal, Andrewsen searched for information about HG, but she came up with little. This inspired her to raise awareness both for the general public and for other women who suffer from the disease.

“I want women to know it does get better,” says Andrewsen.

To those ends, Andrewsen has created a blog, www.letterstozane.blogspot.com, where she talks about her experiences, provides information about the disease and invites other women to share their HG stories.

She also published Letters to Zane, a book written to her unborn son that includes journal entries from throughout her pregnancy as well as information about her experiences with HG. She is donating 30 percent of the proceeds from the book to the Hyperemesis Education & Research Foundation, or HER, (www.hyperemesis.org), one of the only sources of information Andrewsen found in her searches to learn about the disease.

The last word on HG: Endure
There is no pretty ending to this story, no easing or ending the suffering women experience when afflicted with HG. Research is underway to understand the disease, but finding a cause appears a ways off. Researchers and drug companies shy from experimenting with new treatments for fear of harming the unborn children. The liability is too high. For those who have someone with HG in their life, Andrewsen urges them to be supportive and understanding because the only solution currently appears to be to endure.