May 20, 2014— -- Sarah Hughes had a great pregnancy and a normal delivery with her second child, Hayley, in October 2010, but five days after the birth, she developed strange symptoms that nearly took her life.
“I was nursing her all the time and waking up in the night feeling almost like an elephant stomped on my chest,” said Hughes, now 38 and assistant to the chairman of the Penn Vet School in Philadelphia. “I couldn’t fully catch my breath and I felt kind of dizzy.”
The Cherry Hill, N.J., mother of two thought she was just tired from the C-section or not sleeping. “I had a dull headache, but I was also a migraine sufferer. I wondered if I was being crazy," she said.
She credits her husband with making her call the doctor, who told her to go immediately to the emergency room. Six hours later, Hughes was diagnosed with post-partum preeclampsia, a life-threatening rise in blood pressure than can cause seizures, stroke and even organ shutdown and death.
“Rob stayed by my side for three days straight, never moved, never left and just sat there because he knew how scared I was and I needed him to just be there,” said Hughes. “I know he was scared but he really was my rock.”
Today, she is a volunteer for the Preeclampsia Foundation, working to raise awareness of this somewhat rare, but life-threatening condition. She writes about her ordeal on her blog, Finnegan and the Hughes, saying she was “shocked” the medical community does not routinely inform new mothers of the symptoms before they are discharged from the hospital.
Pregnancy-induced hypertension, also called preeclampsia or toxemia, is a pregnancy complication characterized by high blood pressure, swelling due to fluid retention and protein in the urine. The condition affects approximately 1 in 12 women, according to the foundation.
Of those, only 5.7 percent will develop post-partum preeclampsia, a rare form of the disease. About 76,000 women die of the condition each year worldwide.
“When preeclampsia persists or gets worse after delivery, it contradicts the myth everyone has in their mind that the cure is delivery and everyone gets instantly better,” said Eleni Tsigas, executive director of the Preeclampsia Foundation, which sponsors Preeclampsia Awareness Month in May.
“It’s a progressive disorder and there is no stopping once it starts,” she said. “If you are not treating and arresting it, it gets worse and worse.”
Typically, the high blood pressure resolves after the birth, but post-partum preeclampsia (pre-seizure), though rarer, can develop any time up to six weeks after delivery.
Symptoms can include weigh gain, abdominal pain, severe headaches, a change in reflexes, spots before your eyes, reduced output of urine or no urine, blood in the urine, dizziness, or excessive vomiting and nausea, according to the Cleveland Clinic.
“It’s pretty common,” Dr. Fadi Khoury, a maternal fetal specialist at the Cleveland Clinic told ABC News. “We don’t know the reason or the mechanism why it occurs, but we think it has something to do with the placenta.”
“First-time moms are at higher risk and women over 35 or those who come in with high blood pressure or renal disease," he added.
If the blood pressure is high enough, doctors treat it with magnesium sulfate to stem seizures. Blood pressure medications can also be administered.
Khoury noted that even though obstetricians are aware of the disease, they can “miss” the symptoms of postpartum onset when new mothers who have had vaginal deliveries are released after only one or two days. When women stay longer for a C-section, he said, “it might benefit to have moms’ blood pressure taken."
A task force at the Preeclampsia Foundation has successfully urged states such as California to require hospitals to provide new mothers with verbal and written information about post-partum symptoms before they are discharged.
“Everybody focuses on the baby after delivery and assumes the mom is OK,” said Tsigas. “If she has not had a baby before, all the symptoms are brand new, and she assumes it’s part of childbirth. ... They can be ignored.”
Amy Keyishian, a 47-year-old writer from San Francisco, had postpartum preeclampsia after the births of both her daughters, who are now 5 and 3. The first time, the high blood pressure was caught in a post-delivery checkup.
“The doctor said he wanted me check into the hospital and he wouldn’t let me drive because at any moment I could have a stroke,” said Keyishian. “I had no symptoms. I felt like a million bucks.”
She warns other new mothers to be aware of the possibility of postpartum preeclampsia in a 2010 blog on The Stir, "Preeclampsia After Delivery: It Can Kill You."
“They say birth is the cure like it was the Bible,” she said. “Giving birth is natural and wonderful, but you could have high blood pressure without knowing it. Check it at home or at Walgreens, but just check it.”
As for Hughes, by the time she got to the hospital emergency room, it took six hours before she was transferred to an obstetrics floor where doctor recognized the symptom as post-partum preeclampsia. Her blood pressure was 220/110 and her skin had a “dusky” look to it, according to Hughes.
“I could have had a seizure or a stroke,” she said. “When I eventually got to the delivery unit, they shut the lights totally dark and started me on magnesium sulfate so I would not seize and put me on oxygen.”
Her oxygen levels had dropped to below 85; normal levels are 95 to 100 percent and anything under 90 is considered low.
Tsigas said when women end up in the ER, medical teams are “not used to taking care of obstetrical issues where they are more tuned in,” she said.
Because preeclampsia can run in families, the foundation has created a registry and will soon be collecting genetic data to understand better the disease.
Today, Sarah Hughes and her two children, 3 and 5, are healthy, but she has decided not to have more children. “I worry it might happen again,” she said.
Join ABC News’ chief health and medical editor Dr. Richard Besser for a tweet chat on high blood pressure today at 1 p.m. ET where he’ll be joined by experts, researchers and patients. If you've never participated in a tweet chat before, here’s everything you need to know to get up and running.