How extreme nausea can define pregnancy

It was during Jessica Beyer's second hospitalisation for severe morning sickness that her doctor sat down next to her and said, "I'm with you, and we're going to get through this pregnancy together."

Beyer says, "I felt like an angel had been sent to me."

Eventually, a combination of intravenous fluids, anti-nausea medications and nibbling on bagels and pop-tarts helped Beyer manage her illness, which persisted until she delivered a healthy baby boy in December 2015.

Although her often highly misunderstood condition – hyperemesis gravidarum, or HG – is typically described as severe morning sickness, it doesn't just happen in the morning. Instead, HG is a 24-hour-a-day marathon of nausea and vomiting that can last throughout the first trimester and, in many cases, for the entire pregnancy. Women with HG lose more than 10 per cent of their body weight during the ordeal and may be faced with having to take unpaid medical leave, while their families scramble to provide care.

"It can get really bad," says Miriam Erick, a nutritionist at Brigham and Women's Hospital in Boston, who has worked with HG patients for more than three decades. "It's really a freight train out of control."

What the medical professionals and patients who are on the front lines of HG want people to know is that there's nothing normal about the condition, and it most certainly is not a psychological rejection of the pregnancy, as was often taught to physicians in the past.

"These women are starving," Erick says. "Starvation is a nasty thing."

When Erick says "starving", she doesn't just mean they're hungry. She means that women with HG are experiencing serious malnutrition, which can also affect the babies they are carrying.

Marlena Fejzo, a researcher with the University of Southern California and UCLA, had HG so severe that it led to the loss of the baby, inspiring her to want to learn more about the disease through genetic research.

"There's something in your body that's coding to do something wrong," Fejzo says. "Looking at genes is an unbiased approach."

A 2010 study led by Fejzo showed that women with a sister who had HG had a significantly increased risk of HG – about 17-fold. Another study by Fejzo indicated that a mutation in a gene that signals vomiting in the brain might also increase the risk for hyperemesis.

Perhaps the most maddening issue for Fejzo, Erick and other medical professionals working to understand HG is the lack of clear data. Up to 60,000 American women are hospitalised with HG each year, and Kimber MacGibbon, who runs the HER Foundation, a grass-roots network of HG patients, health-care providers and researchers, estimates that another 378,000 women visit emergency rooms on an outpatient basis with HG symptoms each year.

"There are so many variables" in how such cases are recorded, MacGibbon says, that "it's almost impossible to track."

For many of the affected women, the disease is a complete mystery. What's worse, sometimes their doctors don't know anything about it, either, meaning that it may not be properly diagnosed.

"Hyperemesis is a true disease like any other disease," says Marikim Bunnell, an OB-GYN at Brigham and Women's Hospital.

"Sometimes nobody's listening to these women. We as physicians need to be asking the right questions," Bunnell says. "She's not supposed to be sick to the point where she's dehydrated. Is she losing weight but also not passing urine? Does she have symptoms of malnutrition or muscle wasting?"

All four of Barbara Phal's pregnancies were marked by HG. "My first pregnancy was hell," says Phal, from California. "The doctors had no idea what was wrong with me, so they just kept admitting me to the hospital." She lost 50 pounds during the first month alone, unable to tolerate food, liquids, motion, light or smells, while vomiting blood and bile after just a sip of water. "I felt like I was dying," she says.

It wasn't until Phal was six months' pregnant and hospitalised again that a resident walking by her room suggested that she be transferred to the antepartum unit. "The hospital had never considered before that what was wrong with me was a pregnancy-related issue," she says. After having endured months of unrelenting nausea, Phal was quickly diagnosed with HG and prescribed medication to help control the vomiting.

"It completely takes over your mind," says Kari Felkamp of Streamwood, Illinois, who had HG for three months last year, spending 17 days in the hospital and losing 26 pounds. "I am an incredibly happy, optimistic person, and I was in the darkest place I've ever been."

"I think people are going to start realising that this is something that needs to be addressed," Fejzo says. "Besides what happens to the women, this is an illness that takes a toll on families, businesses and the economy."

At one point, after Beyer's second trip to the emergency room in 24 hours, her husband looked at the doctor and said, "This is crazy, it's not safe for me to take her home. I'm scared for her life and my child's life."

Beyer was scared also, saying, "I sent my parents text messages telling them, if I died, I wanted them to know I loved them." Because she needed constant care, her mother travelled to Beyer's Pennsylvania home for four weeks and brought her to South Carolina for a further six, so that Beyer's husband could go to work.

Having lived in three countries during four HG pregnancies, Jennifer Bahen's experience is probably different from most.

"In Germany, I thought the health care was great, in the sense that my doctor understood it to a certain point and was quick to try and stabilise me," she says. "In Italy, it was a nightmare. It was like they kept saying it was all in my head."

Now living just outside Toronto, Bahen recently gave birth to her fourth baby, noting that her current doctor was "literally my saving grace. He was calm and knew, after my history of extreme HG, that I needed medication. I swear that because we attacked HG early this time, it was managed and stable by 19 to 20 weeks."

Medication often seems to be the stumbling block for doctors who are concerned about birth defects. "There are issues to treating someone who is pregnant, so safety is an issue," says Fejzo, "but there are interventions that have proven to be safe."

Among the interventions recommended by the American College of Obstetrics and Gynecology are the combination of doxylamine, an over-the-counter antihistamine, with vitamin B6, which has shown a 70 per cent reduction in nausea and vomiting during pregnancy, and Zofran, an anti-emetic drug commonly used to control nausea in chemotherapy patients.

"Zofran is a miracle drug for some people," Bunnell says. Although lawsuits have been filed against Zofran manufacturer GlaxoSmithKline, citing birth defects such as cleft palates and heart defects, a study published by Fejzo found no correlation between the drug and birth defects.

Although Zofran is approved for treating nausea caused by chemotherapy, doctors also prescribe it off-label to pregnant women. The Food and Drug Administration classifies it as a Category B drug, which means it has been tested in animals but not people, and warns that "this drug should be used during pregnancy only if clearly needed."

Bunnell prefers to start with non-pharmacologic interventions, such as adjusting the woman's diet, providing intravenous fluids and shortening the workweek. "My goal is not to make you feel well," she says. "My goal is 'Can we get you to vomit less?' "

For Erick, the key is in looking for patterns among the triggers. "You'll hear common themes," she says, "and women usually end up hiding away in a dark room as far from the kitchen as they can get. No light, no smells, no noise." Any HG patient is naturally reluctant to eat after weeks of nonstop vomiting, Erick says, so the key is to listen and not be judgmental: If the patient is willing to nibble a candy bar and sip some soda, she'll happily provide it.

"I once had a patient who said she had a craving for frozen tater tots," Erick says. "And I mean that she wanted to eat them actually frozen, not cooked. So I ran to the cafeteria and got some frozen french fries - it was the closest thing I could find to the tater tots – and put them on a plate with some ketchup on the side."

When the frozen fries arrived, that patient was able to eat them and, more important, keep them down. "She knew exactly what was going to work," Erick says, "but she didn't want to tell me because it was some weirdo food."

At the end of the HG ordeal, there is, of course, a baby – often born perfectly healthy, although the HER Foundation has been tracking possible developmental delays and other problems in children whose mothers had HG. And typically the nausea and vomiting ends almost immediately after the woman gives birth.

"Emotionally speaking, I was so happy that the nausea was gone," says Sharaya Greathouse, who is pregnant with her third child and had HG with the previous two pregnancies. "I went back to eating like a normal person the same day I delivered.

"It was such a huge relief – not to mention I had a brand-new sweet little baby to hold and bond with, which also lifted my spirits."

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