Marianne Bohn sat at her dining room table looking at her laptop, tears streaming down her face.
A Preeclampsia Foundation video played on the screen.
It featured a husband talking about feeling helpless as he watched his wife die from postpartum preeclampsia two days after giving birth to their daughter.
Bohn wiped at her tears.
“If my friend had not come to my house when she did, that would be my husband,” Bohn said. “That’s why I’m doing this.”
Six years ago, Bohn suffered postpartum preeclampsia following the birth of her third child, Samuel. In her case, the preeclampsia took the form of a life-threatening disorder called HELLP syndrome.
Now, she’s planning the Promise Walk of West Michigan to spread awareness about HELLP syndrome.
“I finally found my voice, and I’m not going to stop until everyone knows what HELLP syndrome is,” Bohn said. “It kills moms and it kills babies.”
‘I feel horrible’
Bohn, who lives in Newaygo, Michigan, had gone through two normal pregnancies for her older children, Jackson, now 16, and Ethan, now 12.
In November 2012, she gave birth to her third son, Samuel.
Her blood pressure had been normal throughout that pregnancy, but it was high during and after Samuel’s birth. She also had a persistent headache.
In the days after she left the hospital, her headache worsened and her face, hands and legs swelled.
Four days postpartum, she got a home visit from her friend, an OB nurse.
“I was sitting there and she said, ‘How are you feeling?’” Bohn said. “I started bawling and I said, ‘I feel horrible.’”
Her friend went to get her blood pressure cuff and took Bohn’s blood pressure.
She remembers the numbers: 190/108. Her friend encouraged her to go to the hospital. By the time they got there, her blood pressure had jumped to 220/118.
Blood work revealed the diagnosis: HELLP syndrome.
“This was my third pregnancy and I had never heard of it,” Bohn said. “I had no idea you could get preeclampsia postpartum.”
Doctors admitted her to the hospital, where her condition only worsened.
“I would tell myself to breathe and I would breathe,” she said. “The nurse came in, and I told her, ‘I feel like I am dying.’ I could hear a sound coming from my lungs and it sounded like Rice Krispies crackling.”
She was transferred to Spectrum Health Butterworth Hospital, where a team of specialists from the Maternal Fetal Medicine team jumped into action.
“It was like heaven. They were like a machine. It was amazing,” she said.
After two days in the intensive care unit, followed by two more days on the high-risk obstetrics floor, she went home.
“I got to be home for Christmas,” she said.
The classic signs of preeclampsia are high blood pressure, fluid retention and protein in urine.
HELLP syndrome, a severe form of preeclampsia, gets its name from three things which show up in a patient’s blood work:
- H: Hemolysis (breakdown of red blood cells)
- EL: Elevated liver enzymes
- LP: Low platelet count
While many women, including Bohn, have been taught that delivery of the baby is the cure for preeclampsia and HELLP syndrome, doctors are trying to teach patients and the medical community otherwise.
About 30 percent of HELLP syndrome cases occur after delivery, Dr. Romero said.
“The problem with preeclampsia and HELLP syndrome is that they can present with pregnancy, but also after delivery. There’s this perception that when you have preeclampsia, if you deliver, then you’re cured,” Dr. Romero said. “It’s not (always) a cure. We’re trying to change that message.”
It’s hard for mothers to pay attention to their own health with a newborn baby, but it is critical nonetheless.
New mothers should be on the lookout for symptoms including headache, pain in the back or belly, nausea, vomiting and generally not feeling well.
“Those are red flags, so you need to be seen,” Dr. Romero said.
About a year after Samuel’s birth, Bohn became pregnant with her fourth child—a daughter, Josie, now 4.
“She wasn’t planned and I was terrified,” Bohn said.
For that pregnancy, she came under the care of Adam Blickley, MD, an OB-GYN with Grand Rapids Women’s Health.
Dr. Blickley monitored her closely and Bohn ended up having an uncomplicated pregnancy.
Five days after Josie’s birth, however, blood work revealed Bohn’s liver enzymes were elevated. She spent five days in the high-risk obstetrics ward again, but this time she didn’t feel the same fear as last time.
“I think that knowledge is power,” she said. “I knew what to look for.”
While it wasn’t a recommendation at the time, Dr. Blickley said that pregnant women who are high risk for preeclampsia and HELLP syndrome may now benefit from taking a recommended dose of low-dose aspirin each day of their pregnancy.
Aside from that precautionary measure, there’s no prevention for preeclampsia or HELLP syndrome.
“This is one of the main reasons we do more frequent visits at the end of pregnancy, to check blood pressure and urine for signs of preeclampsia,” Dr. Blickley said. “It’s unpredictable and it’s usually asymptomatic before it’s severe. It’s one of the top killers of women in pregnancy throughout the world.”
To help ease her fear during her fourth pregnancy, Bohn went to social media looking for support.
She found a group of HELLP syndrome survivors from around the world. From them, she learned about the Preeclampsia Foundation and a summit she attended in Chicago last October.
That’s also where she first saw the video that still brings her to tears.
“I met some other amazing advocates who helped me find my voice and empowered me to organize this walk,” Bohn said.
Bohn, who formerly worked as a certified medical assistant, also found a new professional goal throughout her journey. In the spring, she will start training to be a doula.
“I have always had a passion for moms and babies,” she said.
For now, she’s focused on organizing the Promise Walk and educating anyone who will listen.
“I want to give resources to women who go through this,” Bohn said. “No one gets it except survivors. If it’s one person I help get through a tough day, that’s enough for me. I don’t want anyone to feel alone like I did.”