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|Amber Brooks • 4/12/18|
The Short Version: Women who have hyperemesis gravidarum (HG) experience severe nausea and frequent vomiting during their pregnancies. The condition far surpasses normal morning sickness and can lead to dehydration, malnutrition, weight loss, and other dire complications. Kimber Wakefield MacGibbon couldn’t open her fridge or look at food without vomiting, and yet she had a tough time getting medical professionals to take her symptoms seriously. Frustrated by doctors who claimed it was all in her head, she established the HER Foundation in 2002 to be an advocate for women suffering from HG. The nonprofit provides thousands of women, spouses, and families with the resources they need to seek proper medical treatment and understand the short-term and long-term impacts of this physiological condition. If you or a loved one suffers from HG, you can find support and guidance through the HER Foundation.
Kimber Wakefield MacGibbon was newly married and attending graduate school when she began to feel violently ill. She thought she had a stomach virus or the flu, so she went to the doctor and learned she was pregnant. It was a surprise, but not an unwelcome one. She and her husband had talked about having children — they just hadn’t realized it would happen so soon.
However, Kimber was taken aback when her doctor said her nausea and vomiting were due to her psychologically rejecting an unwanted pregnancy. She hadn’t even known she was pregnant, so she didn’t understand how her sickness could be in her head. “It’s damaging to women to be told that,” she said. “I felt horribly guilty for a long time.”
During her pregnancy, Kimber’s nausea only increased in intensity. She began vomiting violently on a daily basis and lost 15% of her body weight. One day, she ended up in the emergency room where a physician (whose wife had gone through something similar) diagnosed her with hyperemesis gravidarum (HG), a physiological disease with symptoms that include severe nausea, vomiting, weight loss, fatigue, and, malnutrition. Women with HG can feel sick at even the mention or sight of food, motion, sounds, and even light.
“My husband and I found our commitment to each other was tested greatly, and we can probably survive anything now.” — Kimber Wakefield MacGibbon, Founder of the HER Foundation
Kimber, who is a registered nurse, couldn’t believe it took so long for health professionals to recognize she wasn’t making herself sick and figure out how to treat it, so she started a website in 2000 to raise awareness about HG and help women seek proper treatment. In 2002, Ann Marie King and her husband Jeremy King joined Kimber in her effort to reach out to women with HG, and together they co-founded a nonprofit organization called the HER Foundation.
Over the last 16 years, the three co-founders have built a comprehensive resource where women, their families, and medical professionals can learn about HG and find solidarity in online support groups. The HER Foundation’s private Facebook group for mothers has over 3,200 members who come together to share their stories and give advice to women suffering from HG. The nonprofit also partners with universities, medical professionals, and other companies to fund research into the causes of HG in hopes of developing a cure.
“We try to develop as many resources as we can for women and their families,” Kimber told us. “Our level of support for women living with HG continuously grows over time. We are always adding to the content and the translations.”
Like Kimber, Ann Marie experienced severe hyperemesis during her pregnancy, and she felt isolated by her condition. When she asked her doctor if she could speak with someone who had suffered through HG, the doctor couldn’t put her in contact with anyone. So she made it her mission to create a network of HG survivors.
“You feel so helpless. No one truly understands HG except those who have experienced it,” she said. “I ask HG women and their families not to forget, but help the HER Foundation fight for research and awareness that is so desperately needed. The future of your children depends on it. Together we are heard.”
Today, the HER Foundation has over 8,000 members in its interactive forum. The site itself sees over 200,000 visitors every year. In addition to peer-to-peer support, the nonprofit organization also partners with universities in California to research the causes of HG as well as possible treatments. You can use the website’s online tools to assess and log your symptoms (or the symptoms of your loved one).
Dr. Marlena Fejzo, a researcher at UCLA, works closely with the HER Foundation to better understand the disease and its impact on women. She aims to combat the misogynistic misconception that HG is a psychological condition. “It’s physiological,” she said. “We’ve been looking to see if there’s a genetic component, and we found two specific genes linked with a significant increase in severe nausea and vomiting during pregnancy.”
Hyperemesis gravidarum tends to run in families, and it can have severe long-term repercussions on the health and happiness of women. According to Marlena’s research, which involves over 1,000 patients with HG, over a third of HG survivors decide not to have more children because of their condition. She also told us women with HG experience a fourfold increase in preterm births and a higher risk of having children diagnosed with emotional and behavioral disorders. Sadly, 100 women in Marlena’s study terminated their pregnancies because of the severity of their symptoms.
Complications of HG can be as severe as gastric ulcers, esophageal bleeding, renal failure, and brain damage. If left untreated, HG can be fatal. “Even in this day and age, there have been deaths related to hyperemesis gravidarum in the US,” Marlena said, “so it’s extremely important that we understand what’s causing it and who’s at risk.”
The HER Foundation is the voice of HG — it advocates on behalf of women suffering from a little-known and often-misunderstood disease. The nonprofit’s mission is to let women know they aren’t alone. Its website offers valuable information, including doctor referrals, to help anyone experiencing or recovering from HG. These resources can also help spouses, family members, and medical professionals who want to understand how they can support women through their sickness.
The website’s extensive online resources include advice for partners taking care of wives or girlfriends with HG. “You have to do your part to decrease her stress because stress worsens the symptoms, and stress on the mom creates stress for the unborn child,” Kimber explained. “There are practical things you can do to help her avoid what triggers her.”
The HER Foundation’s Survival Guides recommend things like avoiding foods with strong smells and putting in an air purifier to keep smells from inducing vomiting. During her pregnancy, Kimber couldn’t enter the kitchen without feeling nauseated, so her husband packed her a cooler of fruit to eat and fluids to sip, which she kept by the bed or sofa where she spent most of her time.
Partners have to be understanding of the needs of women experiencing HG. Whether that means not wearing a cologne that makes her feel sick or doing housework when she feels too weak to stand, you have to do what you can to make sure she keeps enough nutrients in her body to sustain herself and the baby.
Sometimes partners also have to be advocates during visits to the doctor because women with HG often feel too exhausted, confused, or guilt-ridden to speak up for themselves. “It’s important to not make her feel guilty for being sick,” Kimber said. “This isn’t in her control.”
The HER Foundation is continually working to validate the experiences of women suffering from HG and give medical professionals, spouses, and families the tools to understand what these women are going through. Kimber told us the HER Foundation has been working with UCLA mHealth to release an app that will help HG patients track their symptoms. That way, a pregnant woman can give her doctors a detailed overview of her health status.
The HER Foundation’s support groups have been remarkably successful at giving women someone to lean on during difficult stages of their pregnancies. Around 900 volunteers offer themselves as a resource to women suffering from HG. Some stay online and offer counseling or doctor recommendations while others are more active and provide hands-on assistance, including vacuuming or babysitting for women with HG.
“We try to connect women with HG because the disease can take a huge toll on individuals and their relationships,” Kimber said.
You can read testimonials from women with HG to get a sense of how debilitating the disease is and how important it is for women and their families to support one another and speak out about their experiences.
“I need support. It is hard, and I feel no one understands,” wrote Mathilde on the HER Foundation’s Facebook page. The French woman said she was pregnant with her second child and suffering from HG. “I think here I’ll get good information and maybe a little support. Thank you for your work; it is truly appreciated.”
“To read other people’s stories going through the same thing and know I was not making it up really helped me.” — Samantha C., a mother with HG
Jeremy King underscored the fact that HG is not morning sickness, and women suffering from HG often need their partners to be their advocates and caregivers throughout their pregnancy and beyond. “Husbands and fathers need to understand that HG needs to be taken seriously,” he said. “The most important thing they can do is support the HG women in their life and be an advocate for them — her life and the baby’s life could be at stake.”
In addition to its supportive forum for pregnant women, the HER Foundation also offers support for mothers who worry about the health of their children. The HER Foundation has a Facebook group dedicated to HER HG Kids. Kimber said they have seen evidence of an increased risk of immune and neurodevelopmental issues in children born to HG pregnancies.
“HG doesn’t stop at the end of the pregnancy. Most of us never have good health again,” Kimber said, “so we’ve become a continuum of support for survivors of HG and their children.”
When you’re sick, it’s important to have people who are behind you to give the love, care, and support you need to get well. Women with HG often face skepticism from people who think the symptoms are all in their heads, and that can make women feel increasingly helpless at a vulnerable time in their lives. The HER Foundation wants women to know that they have a voice and that their suffering is valid. Hyperemesis gravidarum isn’t a psychological disorder — it’s a rare medical condition that can lead to malnutrition and other serious health complications.
Thanks to the HER Foundation’s dedication to research and education, many mothers and mothers-to-be now have the resources they need to seek treatment and take care of themselves (and their babies) without feeling guilt or shame.
“It’s our hope that we at least stop people from thinking it’s all in the woman’s head,” Marlena said. “Hyperemesis gravidarum is a real biological condition, and these women need support from their doctors and their families. We want them to know there’s hope that progress is going to be made after all these years.”