It was almost Christmas Day 2009 when Molly McGuire, in her third trimester of pregnancy, began to feel deeply unwell. Her body began to swell at a much greater rate than it had at any other point in her pregnancy.
“I gained more than five pounds in a week,” McGuire said.
Swelling in the joints, and other soft tissues, can be consistent with a normal, healthy pregnancy. But these symptoms came on rapidly, and included swelling in her lips and eyelids, and a decrease in her urine output. She called her OB-GYN’s office and was assured that she was most likely in the beginning stages of a battle with the flu.
“I felt dismissed,” McGuire said. “And I just kept feeling that way.”
There was no doubt in McGuire’s mind that whatever was going on in her body wasn’t the flu. But the Muncie resident didn’t know what it was, and she didn’t know what options she had aside from continuing to call and describe her symptoms.
She remembers a night spent surrounded by pregnancy books on the floor of her bedroom, crying, trying to understand why she felt so sick, and feeling completely alone.
She said calls to her OB-GYN’s office were returned with the same response: McGuire had “never been pregnant before,” so, essentially, she couldn’t know what was happening to her.
“I didn’t know what to believe. I couldn’t make good decisions. My brain and liver were beginning to shut down, but I didn’t know that yet,” she said.
She had high blood pressure. Her baby had stopped moving — and she said that concern was also dismissed by her doctor. McGuire was terrified.
When she failed a test for gestational diabetes with the diagnostics lab, a nurse handed her a pamphlet of symptoms to watch out for. Standing in the lobby while reading it, she realized she had 10 of the 10 signs of preeclampsia, a potentially dangerous complication of pregnancy that affects an estimated 58,000 women each year in the U.S. If left untreated, preeclampsia can lead to serious, even fatal, complications to a mother and her baby.
McGuire survived her preeclampsia diagnosis, but her baby did not. Immediately after doctors confirmed McGuire’s diagnosis, she was admitted to the hospital and her labor was induced — her baby boy was stillborn.
Rare disease is often treatable if caught early
According to experts at the Mayo Clinic, preeclampsia is believed to begin in the placenta, a vital, temporary organ that feeds the fetus through pregnancy. Women with preeclampsia don’t properly develop the new blood vessels needed to supply the placenta with the oxygen and nutrients the fetus needs.
Because preeclampsia affects blood vessels, a mother’s liver, kidneys and brain can also become dysfunctional. The best defense, according to the American Medical Association, is prenatal care.
That’s what Jill Inderstrodt, a professor and research scientist at the Public Policy Institute at Indiana University, urges.
“Preconception and prenatal care are critical to having a healthy pregnancy and delivery. Preconception care means making sure that mom is in good cardiovascular health,” Inderstrodt said.
She also pushes the importance of prenatal care that includes regular labs, check-ups and ultrasounds.
It sounds simple, but Inderstrodt understands the challenges many Hoosiers face when attempting to access care.
“We know that moms with fewer resources are less likely to seek prenatal care because of work, transportation, child care issues, or even just not knowing how important prenatal care is because no one ever told them,” she said.
Risk factors for preeclampsia include age — especially for those over 35 — as well as women experiencing their first pregnancy, and those who have a history of the disease in their family.
Despite having a partner and a faith community, McGuire didn’t know what to look for in her first pregnancy relative to potentially fatal illnesses. She was 30, preparing to give birth to her first child, a son named Michael. She had no expectation of knowing everything, but assumed medical professionals would have all the answers.
Inderstrodt said that while it seems obvious, there are things everyone who is facing a pregnancy complication should know.
“There are the immediately visible effects: changes in body composition, delivery effects like Cesarean scars and vaginal tears, even an increase in varicose veins,” she said. “But especially for moms who have … complications like preeclampsia and/or gestational diabetes, they are at increased risk of cardiovascular disease and/or type 2 diabetes, respectively.”
While moms themselves may be unaware of the risk, the situation gets scarier, Inderstrodt said.
“Many obstetricians and especially primary care providers are also unaware of the additional risk these women carry. This means women who have had (especially) preeclampsia may not get the required screenings needed to protect their heart health across the lifespan.”
Educating and advocating for good care
Nearly two decades after her loss, McGuire said she feels compelled to tell her story.
“I knew my baby had already passed,” before the doctors confirmed it, McGuire said. “But I knew I was dying, too.”
She remembers wearing a set of heart-shaped earrings to her appointment that day, a silent symbol of her prayer for a miracle, that her child was still alive inside her body.
“I put them in a small hospital bag that they returned to me after everything, and I cried when I saw them.”
She never wore them again.
As bad as it was, it could have been worse, she said.
“I feel very lucky. The fetal health specialist told me if I hadn’t spoken up that day, sobbing and holding a pamphlet, I would have been sent home, and my child’s father would have arrived from work and found me dead,” she said.
Now 47, McGuire is the mother of two daughters, and a vocational counselor employed by Indiana’s Family and Social Services Administration in Muncie, Indiana.
She also spends a significant amount of time telling her story and advocating for better maternal education and care across the nation, but particularly in Indiana.
She and her children’s dad agree that speaking out publicly about their tragedy is necessary.
“He said, ‘If it saves one mom or one baby, it’s a story worth telling.’”
This content is underwritten with support from the American Heart Association.
Ashley Ford is a Free Press Indiana reporter focused on issues affecting women and girls across Indiana. You can reach her at ashley.ford@freepressindiana.org.
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