SALT LAKE CITY — Pregnancy is supposed to be a time of joy. But for women who suffer from hyperemesis gravidarum, it can be deadly for both mother and baby.
Most people are aware that pregnancy goes hand-in-hand with morning sickness. What they might not know is that morning sickness can take a turn for the worst, leaving women violently ill, often for most of the pregnancy.
Hyperemesis gravidarum (HG) is a condition where pregnant women have severe nausea, vomiting, weight loss and electrolyte disturbance, according to the American Pregnancy Association. There is little awareness about HG, which is why sufferers are grateful for Kate Middleton, who recently announced her pregnancy with her second child. Middleton, who suffered from HG with her first pregnancy, is experiencing it again, and has stepped away from her royal duties on doctors' orders.
Even with the recent exposure, it is a commonly misunderstood illness.
"It's not just morning sickness"
Up to 80 percent of pregnant women experience some type of morning sickness, which is why HG is easy for some, including doctors, to write it off as women being melodramatic, said HG sufferer Katie Buhler from Salt Lake City.
“It’s kind of an insult for people to call it morning sickness,” Buhler said. “You’re over the toilet, throwing up so much that you start to throw up blood. Women have to get PICC lines to stay hydrated.
"I’m glad that Kate Middleton's doctor is saying this is terrible and hard and she can’t work because people say things like 'just eat ginger and crackers' or 'Oh I know how you feel, I had morning sickness too.’ ”
Jessi Edwards of Portland, Oregon, said she was glad when she started to feel sick during her second pregnancy, but people didn’t understand when it turned into HG.
It's kind of an insult for people to call it morning sickness. You're over the toilet, throwing up so much that you start to throw up blood. Women have to get PICC lines to stay hydrated. I'm glad that Kate Middleton's doctor is saying this is terrible and hard and she can't work because people say things like 'just eat ginger and crackers' or 'Oh I know how you feel, I had morning sickness too.'
–Katie Buhler, mother of 3 who had HG with all 3 pregnancies
“Hyperemesis sufferers often get patted on the shoulder and told, 'Don't worry. This is normal. You'll feel better soon' ” Edwards said. “But we don't feel better, and a lot of people just don't understand.”
Several complications of hyperemesis include detached retinas, cracked ribs, esophageal tears, as well as complications from dehydration that include hallucinations.
A day in the life
Edwards would wake up, go to the bathroom and immediately have to throw up.
“Throwing up in the sink is much better than throwing up in the toilet,” she said. “No toilet water splash back in your face and no kneeling on the gross bathroom floor.”
She would try and get some chores done, make breakfast for her toddler Jack while trying not to throw up from any smell coming from the kitchen. Then she'd eat a bland breakfast only to throw it up half an hour later. Then she would eat another bland snack to keep her stomach full.
“It seems ridiculous to empty your stomach and then try to fill it again, but the sickness that comes with not eating is much worse than throwing up food,” she said. “My mom (who was a fellow Hyperemesis sufferer and made it through three such pregnancies) always sympathetically joked that we only rented food.”
Edwards would immediately turn on the TV to keep her toddler entertained because any other effort on her part would lead to more vomiting. She said on top of the horrible nausea and sickness, she felt terrible guilt for not being well enough to do normal things with him.
“I am a terrible mother because my son watches TV all day,” Edwards said. “He asks me several times a day to get down on the floor and play cars with him, but I can't do it.”
Both Edwards and Buhler said the anti-nausea medication just made their days "bearable," but the nausea was always there.
"I wanted to die"
- Severe nausea and vomiting
- Food aversions
- Weight loss of 5% or more of pre-pregnancy weight
- Decrease in urination
- Extreme fatigue
- Low blood pressure
- Rapid heart rate
- Loss of skin elasticity
- Secondary anxiety/depression
- Detached retinas
- Cracked ribs
- Esophageal tears as well as
- Complications from dehydration including hallucinations
Buhler said she just lived in the bathroom. She was so sick, she couldn’t even walk from the bed to her bathroom, so she would have to crawl on the floor. Buhler had hyperemesis with all three of her pregnancies and said the last one was the worst. She also had severe depression due to the lack of nutrients and energy in her body.
“You get sick and you spiral down super fast,” Buhler said. “You can’t even stand. I couldn’t hold my head up. … My husband listened to me cry and sob and sob and sob. The only relief you have is sleep because you aren’t aware.”
She had several points where she told her husband to take her to the hospital to get her third baby out of her because she couldn’t handle the illness anymore and “didn’t want to live through it.”
“When you’re that sick, you’re not processing anything correctly,” she said. “I’m glad I had people around me to help me. Women who don’t have that sometimes terminate and have to deal with the repercussions from that.”
Silent suffering and "therapeutic abortions"
Buhler is a part of the Hyperemesis Education & Research Foundation (HER) Facebook group, where sufferers go for information and support. She says it is common for women to come and say they are so sick, they might die and need to terminate their pregnancies.
“The women get therapeutic abortions where their doctor says, ‘You can’t do this anymore, you need to be done, and the women say, ‘I need to be done,’ ” she said. “After they terminate, they have to live with that devastating loss their whole life.”
HER foundation says that 15 percent of women who suffer from HG get “therapeutic abortions.”
When women can’t find a doctor who knows how to treat HG, supporters on the Facebook group will find one in their area for them, Buhler said.
Just last week, Buhler saw four different women post on the same day that they needed to terminate their pregnancies because they could not handle another day being so sick, “but everyone jumped in and said, ‘You can do it,’ ” Buhler said, and they were able to help them get through another day.
No solution for the future
Kate Middleton might be bringing more awareness to this condition, but there is almost no research into why this happens or how to stop it.
“In the 20th century it was erroneously decided that HG was caused by psychological conflicts instead. Limited research and outdated theories have fostered this belief from generation to generation of health professionals, resulting in unnecessary suffering and financial loss for too many women and their families, not to mention unknown consequences for their unborn children,” the HER website states.
In 2005, HER researchers and Rep. Xavier Becerra, D-California, advocated for more research by the government, but nothing official came from that meeting.
Over 18 percent of women who experience HG come away with post-tramatic stress disorder, including Buhler.
"It creates a fear," she said. "You start to panic that you'll have to go through it again. I can never go through that again, ever."
For more information, visit helpher.org.