It has been nearly seven years since Sarah Hughes had preeclampsia, but she still remembers the anguish of missing her newborn's first three days of life when this pregnancy complication sent her back to the hospital with dangerously high blood pressure.
Hughes said she could tolerate the gasping for breath and intense headache as well as the painful, intravenous magnesium sulfate she received to reduce the chances of a seizure, but she could not stand being away from her new child, who was at home being cared for by relatives.
Although her baby girl, Hayley, was born healthy, the entire family was anxious for days afterward, worried that Hughes might become ill again.
A new study shows that preeclampsia also has effects beyond individual families such as Hughes's, according to William Callaghan of the Centers for Disease Control and Prevention.
"When we talk in public health, we may be using the story of the individual to make our case because that can be a pretty compelling story, but we have the obligation of looking at what the burden is on the entire population," said Callaghan, who is chief of the Maternal and Infant Health Branch in the CDC's Division of Reproductive Health.
The study, published in the American Journal of Obstetrics and Gynecology, reported that preeclampsia increased the likelihood that mothers and babies would develop medical problems (from 4.6 percent to 10.1 percent for mothers and from 7.8 percent to 15.4 percent for babies). The condition also lowered babies' gestational age by 1.7 weeks.
The associated medical problems cost more than $2.18 billion in care for mothers and babies in the year after birth. Some mothers developed significant problems such as renal failure, stroke, heart disease and seizures. Babies suffered from breathing trouble, vision problems and long-term developmental issues.
Preeclampsia can interfere with the blood flow to the placenta and the fetus, leading to low birth weight, prematurity and even death. The only cure for preeclampsia is delivery of the baby.
"There is very little work on the national epidemiology of preeclampsia, which is surprising given that it is a leading cause of maternal mortality and maternal mortality rates in the U.S. and exceeds those in other similarly developed countries," Anupam B. Jena, one of the study authors and a professor at Harvard Medical School, wrote in an email.
"Preeclampsia is a condition that has additional relevance because it affects mothers and families at arguably one of the happiest times in a family's life and the condition is often unexpected and unsuspected."
Jena and colleagues used data from California hospital discharges and birth certificates from 2008 to 2011, as well as other nationally representative data to estimate the medical and financial costs for 156,681 mothers and babies affected by pre
eclampsia in 2012.
The researchers also noted that the preeclampsia rate has climbed in recent years, from 2.4 percent of pregnancies in 1980 to 3.8 percent in 2010, partly because of obesity and because women are becoming pregnant at a later age.
"Some of it could be driven by risk factors we know about, other differences could be driven by risk factors we don't know very well, and part of it could be differential access to health-care providers who are screening moms for preeclampsia," Jena said in an interview. "There could also be a difference in the quality of prenatal obstetrical care for mothers in the U.S. versus other countries."
Callaghan also said that even though the condition is "probably the most common severe problem for women in pregnancy," it hasn't been sufficiently researched. He noted that in 1931, the Chicago Lying-In Hospital — now part of University of Chicago Medicine — displayed four plaques honoring doctors who made significant contributions to obstetrics. A fifth plaque — reserved for whoever discovers a way to prevent and cure preeclampsia — remains blank.
"It reflects the truly enigmatic quality of this disease," Callaghan said.
The costs of preeclampsia are probably even higher than the study estimates, said Cindy Anderson, associate dean for academic affairs and educational innovation in the College of Nursing at Ohio State University.
"If the women had more-mild forms, which can still have consequences, they may have been less likely to be reported," Anderson said. "That makes the problem even bigger."
The study also didn't account for the long-term effects, costs that are harder to quantify, she said.
Anderson said one way to help pregnant women get treatment before the condition becomes too dangerous is to educate them about symptoms early. Those symptoms, which can be difficult to distinguish from the typical effects of pregnancy, include headache, vision changes, pain in the upper abdomen, shortness of breath, difficulty breathing and swelling of the hands and face, Anderson said.
Doctors also need to do a better job warning women that preeclampsia is associated with a risk of heart disease, Anderson said.
"If they knew they were at risk, they could do some preventive measures . . . so that as soon as this risk is identified, it could be managed," she said.
Eleni Tsigas, chief executive of the Preeclampsia Foundation, said her nonprofit has been promoting more awareness of the condition among health-care providers and patients.
"Many, many women get through their prenatal care never hearing about preeclampsia, never being tuned in to the warning signs they should be," said Tsigas.
Tsigas said the study showed the crucial need for more research.
"Our hope is it really makes everybody sit up and realize this is a significant issue — physically, emotionally and, now, clearly financially," said Tsigas.
It's an experience Hughes, who writes about it on her blog, will not forget.
"I remember being in the emergency department, and anybody who would walk by, I would say, 'Excuse me, I need to go home,' " said Hughes, who lives in Cherry Hill, N.J., with her husband and two children and is a former volunteer for the Preeclampsia Foundation in Florida. "I think it took a few months for me to feel secure in going out and doing things. . . . It was a huge shock to our family."