The BBC historical drama “Downton Abbey” may have lost one of its main characters to a rare pregnancy condition in its most recent episode, but preeclampsia — the condition that killed soft-hearted Lady Sybil — is hardly history, say experts. In fact, it’s still quite deadly to women today.
“It’s a very serious complication of pregnancy that puts both the mother’s life and the baby’s life at risk,” says Eleni Tsigas, executive director of the Preeclampsia Foundation.
Preeclampsia is a life-threatening disorder that occurs only during pregnancy and the postpartum period, according to the foundation’s website. It and its related disorders — eclampsia and HELLP syndrome — are characterized by a rapid rise in blood pressure that can lead to seizure, stroke, multiple organ failure and death.
The condition affects as many as 8 percent — up to 300,000 — pregnant or postpartum women in the U.S. every year, says Tsigas, with about a quarter — or 75,000 — experiencing serious outcomes such as organ failure or even death.
“Globally, we lose 76,000 mothers and a half million babies each year,” she says. “In the U.S., we lose a few hundreds moms a year.”
What causes this condition?
“That’s the $64,000 question,” says Tsigas. “It’s called a disease of theories because there are so many theories as to what the ultimate cause is. We don’t know and that’s held us up from having any kind of intervention. We treat the symptoms but I think it’s like putting a Band-Aid on an arterial bleed. You’re not getting at the root cause.”
Symptoms of preeclampsia can include high blood pressure, protein in the urine, swelling (particularly in the face, around the eyes and the hands), abdominal pain, headache, changes in vision, sudden weight gain, mental confusion, shortness of breath, racing pulse and lower back pain — although some women report few or no symptoms. The condition typically occurs in the late second or third trimester or up to six weeks following the birth of the baby.
Very young mothers or older mothers (i.e., mothers under 18 and over 35) are at higher risk for preeclampsia, says Tsigas, as are women who are obese, diabetic, carrying more than one fetus, or suffering from preexisting hypertension or autoimmune disorders. But the condition also strikes women who don’t fit into any of the risk categories.
“I can give you a litany of risk factors but the fact is even if you don’t have any risk factors, you’re still at risk,” she says.
Gestin Suttle, a 46-year-old mother of two from Sammamish, Wash., who was diagnosed with preeclampsia with her second pregnancy 12 years ago, says she didn’t experience any of the “muddled thinking” that Downton Abbey’s Lady Sybil exhibited, but she did have severe headaches, which she attributed to caffeine withdrawal.
High blood pressure was the big tip-off, though.
“They spotted it at my prenatal,” she says. “They saw that my blood pressure was going up and up and I had swollen ankles and everything. My practitioner was right on top of it. She put me on bed rest for six weeks and it definitely helped. I was able to go to full term with my pregnancy.”
Suttle delivered without a hitch although she says her doctor did treat her for eclampsia, a complication of preclampsia that causes seizures during pregnancy or in the postpartum period.
“I was out of it during delivery but I heard back from my practitioner that my blood pressure was climbing and they were giving me things,” she says. “They were concerned about me going into convulsions.”
According to Tsigas, eclampsia seizures are caused by a mother’s skyrocketing blood pressure.
“With extreme hypertension, there’s a cerebral impact,” she says. “It might be because there’s a swelling on the brain.”
A spike in blood pressure can have other tragic consequences, though. I didn’t have seizures but because my blood pressure went up so quickly and so high, it caused my placenta to separate from the uterine wall,” says Tsigas who lost her baby to undiagnosed preeclampsia in 1998.
Dr. James Martin, past president of the American College of Obstetricians and Gynecologists, calls preeclampsia the most important medical complication of pregnancy and feels the condition is both understudied and largely misunderstood.
“I would like to see substantial research funding provided to answer the answered questions about this major disease,” he says.
One of the biggest tragedies, he says, is when mothers develop HELLP syndrome, which occurs in 10 to 20 percent of pregnant women with severe preeclampsia or eclampsia.
“It causes stillbirths and loss when we have to deliver at 23 weeks,” he says. “We’re up against a wall for the very, very preterm pregnancies. We don’t have a methodology to prolong the pregnancy. When it presents, it requires us to deliver in the next day or two. I would like to see interventions that could hold it at bay for a week or two or three so we can get to viability.”
As for Downton Abbey’s portrayal of the condition, Martin calls it case of “classical eclampsia.”
“That really develops in only about a half percent of women with preeclampsia,” he says.
Unfortunately, preeclampsia symptoms can still be dismissed or overlooked by physicians, as in the “Downton Abbey” episode.
“If a woman has a headache in the last half of her pregnancy or has visual disturbances or extreme breathlessness or pain in the sternum, these are not instantly apparent to her as medical problems,” says Tsigas. “She may be advised to not make a big deal about it — ‘You’re pregnant, suck it up’ — so these symptoms are overlooked. What starts as something that could be diagnosed sooner progresses and turns into a crisis.”
Once the condition is diagnosed, however, there are more options now than back in the day, says Martin, pointing to the careful controlling of the mother’s blood pressure as a major step forward. Ditto for the use of magnesium sulfate to control seizures, a drug that was not available in 1920.
“It’s the best agent for preeclampsia patients at risk for becoming eclamptic or for eclampsia patients, to stop further seizures from happening,” he says.
Still, both patients and patient health advocates agree that more needs to be done about the condition.
“It’s amazing that we don’t have any better solutions,” says Suttle. “The answer is still bed rest and have the baby. From 1920 to 2013, we don’t have anything better. That’s not so encouraging.”