Written by: Mike Senecal
Edited by: Lillian Guevara-Castro
In a Nutshell: There was a time when the male-dominated medical profession assumed “female disorders” were primarily psychological if doctors didn’t understand them. That was the case with hyperemesis gravidarum (HG), a debilitating nausea and vomiting disease affecting women during pregnancy. HG is more than morning sickness — it’s the inability to live a normal life due to weeks and months of severe illness. Housebound HG sufferers lose weight, the ability to make a living, and sometimes lose their pregnancies. The HER Foundation provides support, research, advocacy, and education to improve HG outcomes. HER is bringing HG into the light.
Pregnancy and morning sickness go hand in hand for many women. Stories of women having irrational cravings and nausea stemming from the smell and taste of food are common symptoms of gestation.
But morning sickness doesn’t occur in every pregnancy. Some pregnancies proceed without a gurgle. When we think systematically about pregnancy, we realize morning sickness (and everything else associated with reproduction) happens on a spectrum. Fortunately, attentive care can alleviate the symptoms of morning sickness.
For Kimber MacGibbon, Executive Director and Co-Founder of the HER Foundation, talk of morning sickness obscures the type of nausea and vomiting that become hyperemesis gravidarum (HG). HG is a potentially life-threatening pregnancy disease that can cause weight loss, malnutrition, dehydration, and debility due to near-constant nausea and vomiting.
HG may result in long-term health issues for the mother and baby. Not surprisingly, a disease of such severity can also result in life-changing financial and family consequences.
After experiencing her HG pregnancy, MacGibbon co-founded the HER Foundation to provide support and education to all who experience HG. The HER Foundation provides education, research, support, and advocacy to improve HG treatment and create healthier futures for mothers and babies.
HER Foundation research established a genetic basis for HG. MacGibbon said the disease, left undiagnosed and untreated, can make morning sickness seem like a walk in the park.
“Hyperemesis tends pretty much to be 24/7 nausea — and not a little bit,” MacGibbon said. “Not just smells but the sight and even the thought of food can make you vomit. Even light and motion can make you sick. The disease forces some sufferers to exist in a dark room alone with no motion, no smells, no nothing.”
HG Consequences Range from Financial to Neurodevelopmental
May is HG Awareness Month and May 15 HG Awareness Day. MacGibbon said physicians have described the debilitating nausea symptoms we now know as HG since the time of Socrates. But the criteria for defining the disease have always been loose.
Some women are hospitalized without knowing they have HG. Health systems sometimes place weight-loss benchmarks on diagnosis. Early, effective pregnancy care can reduce symptoms and, therefore, the number of diagnosed cases.
It hasn’t helped that the early 20th-century Freudian tradition tended to view conditions that doctors didn’t understand — especially female conditions — as primarily psychological. That anachronistic point of view has tended to perpetuate in the tradition-bound medical profession.
“For the longest time, doctors pushed that HG was psychological,” MacGibbon said. “When I was pregnant 25 years ago, I was told that my nausea was my psychological rejection of a child I didn’t want.”
That’s unfortunate because mothers can lose so much weight from HG that they lose their babies midway through pregnancy.
“I probably receive an email monthly from someone who has either terminated or lost their baby due to severe weight loss and other symptoms,” MacGibbon said. “It’s definitely not rare.”
MacGibbon’s child was born a skinny baby. MacGibbon was so weak from failure to gain weight during her pregnancy that she had little strength. Her child’s sensory and neurodevelopmental issues, though not typical, are associated with HG and resulted in years of special care and financial stress.
Some developmental issues in HG children occur from lack of nutrition, stress, and other factors. But the disease appears to be associated with other neurodevelopmental problems, even autism.
“My child didn’t sleep, ate very erratically, and I started having memory issues because I was so sleep-deprived,” MacGibbon said. “Parenting completely consumed my life for 15 years.”
Dealing with the Dislocation of an HG Pregnancy
The bottom line is that doctors strongly imply to many HG mothers that the sickness is a mental health issue, MacGibbon said.
“You’re telling a mother that it’s her fault she’s sick because she’s psychologically unstable,” MacGibbon said. “And then she has a child who acts in ways that are not typical. So now she’s being told that she’s not a good mother. You can imagine the psychological toll.”
MacGibbon needed about 18 months to recover enough from her pregnancy to begin collecting information related to HG. The HER Foundation website contains copious clinical tools, including brochures, fact sheets, research information, and treatment protocols.
“HG requires a huge amount of money, time, and resources, and you can never get those years back,” MacGibbon said.
One of the most significant financial stressors is that HG sufferers frequently cannot work at their usual jobs. Many women lose their jobs because of their inability to function. Some file lawsuits and gain modified work accommodations, but not always.
Then there’s the issue of having children at home who need care. Caregivers and home managers can provide some compensation for time lost due to HG, but this is an expensive privilege for most.
And then there’s medical care. Severe HG cases require extensive attention and IV fluids. Gaining admittance to an ER isn’t a guarantee. Many HG sufferers resort to outpatient clinics, which may cost $200 to $400 out of pocket per visit.
Partners or other family members may help, but there’s a cost to that. Some mothers never return to work because of fear of HG symptoms returning during subsequent pregnancies.
“Costs are hard to quantify because every family is different, but some become devastated and lose their homes,” MacGibbon said. “When the mother’s a primary breadwinner, the family loses health insurance and may end up on Medicaid. When you put all those things together, there’s a lot of complexity to the financial impact of HG.”
HER Foundation: Refashioning HG Diagnosis and Care
MacGibbon, a registered nurse by training, has dedicated much of her professional life to righting these wrongs for HG-affected families. One HG research study found that 82% of women suffering from HG changed their family plans as a result of the disease.
In addition to research and clinical tools, the HER Foundation provides access to social media support groups, including a monthly Zoom group, a Reddit community, a community engagement platform on the HER Foundation website, Facebook groups, and a professional referral network.
A professional can provide immediate help. The website also provides access to crisis lines.
Since co-founding the HER Foundation, MacGibbon has talked to thousands of women worldwide and identified many trends and methods to improve HG care. Patients do better when caregivers are proactive with fluids instead of letting moms stay chronically dehydrated.
One doctor in Alabama started a morning sickness clinic and is having phenomenal success using the HER Foundation’s treatment protocol to treat with a combination of fluids and medications.
It’s part of the foundation’s commitment to educating the medical community about the prevalence and potential severity of the disease. Many doctors see HG as a nuisance condition, and it’s challenging to bill insurance providers for care.
But when clinics like the one in Alabama stick with the program, mothers and babies don’t have as many pregnancy and postpartum issues. Difficulty during labor is a factor in many HG pregnancies. And there’s a high rate of preterm birth among women in the HG community.
“One in three HG babies don’t make it to term — that’s huge,” MacGibbon said. “The bottom line from a financial perspective is that early and aggressive care prevents costly long-term outcome issues for mothers and children.”
