Larissa Nickson had never heard of preeclampsia when she was pregnant for the first time three years ago. Then it changed her life.
Nickson developed preeclampsia, a pregnancy complication characterized by high blood pressure in the mother that has no known cause or cure, when she was pregnant with her daughter, Charlotte. The only “treatment” for the disorder is to deliver the baby and placenta, Nickson said—doctors believe that the condition starts in the placenta. Nickson was forced to give birth at 20 weeks, and Charlotte did not survive.
Nickson had so many questions that needed answers, and she found the Preeclampsia Foundation after doing some research online. After two years of involvement, she, her husband, James, and son, James, are being honored as this year’s New Jersey Promise Walk for Preeclampsia Mission Family. The walk is set for Sunday, May 21 at the Oak Ridge Park in Clark starting at 10 a.m.
“I was out of work for the next six weeks,” Nickson said. “I had to research and do everything that I could to get answers. That was just my way of dealing with grief, to do something proactive.”
Nickson and her husband, who live in Lawrence, met as students at Rutgers University in 2004. Nickson, originally from Neptune, and James, a Bergen County native, became close after taking a class together and started dating in 2007. They celebrated their three-year wedding anniversary in April.
Nickson found out she was pregnant not long after she and James got married.
“We had been together for a very long time, so it was just kind of time for it all to happen,” she said.
The pregnancy was smooth, at first. Nickson went for a routine first trimester screening 12 weeks in and found that certain levels were low. She had some follow-up testing, and everything looks normal after that.
Fifteen weeks in, Nickson’s doctor noticed that her blood pressure was a little high. Doctors have always told her that, she said, because she often gets anxious during appointments. Still, she was advised to monitor it twice a day.
She went for more testing, this time an AFP screening to test for disorders like spina bifida and anencephaly, at 16 weeks. This time, her levels were high, so her doctor recommended a level two ultrasound at 17 weeks—a test normally performed at 20 weeks. The ultrasound revealed that the baby was healthy. It was time to rule out that anything was wrong with Nickson herself. She later found out that the abnormalities in those first two tests can be early warning signs of preeclampsia.
Then, that Labor Day weekend, her blood pressure skyrocketed to 160/90. Nickson, a therapist, started doing deep breathing exercises to calm herself down. That next Tuesday, at another AFP test, she told the nurse that administered it about her blood pressure scare over the weekend. As a precautionary measure, the nurse tested Nickson’s blood pressure again—this time, it was 180/100.
Nickson was sent home with an appointment to see a renal hypertension doctor later that week. That doctor told her to go straight to the hospital, where Nickson was immediately admitted. She underwent a battery of tests and scans and received regular doses of magnesium to prevent seizures and strokes, as well as other intravenous and oral medication. Her blood pressure stabilized a bit, but it was still consistently high.
After a few days in the hospital, her doctors finally told her she had a severe, atypical type of preeclampsia. Nickson was put on bedrest until delivery, which was still up in the air at that point. At barely 20 weeks, Nickson and her doctors hoped to push delivery to 24 weeks, which is the age of viability in New Jersey—at that point, doctors could try to save the baby.
Things started to look up. Nickson’s condition had stabilized, and her doctors took her off the magnesium. She was even able to get out of bed, but later that night, her blood pressure shot up once again. The next morning, she was coughing, and an x-ray showed that her lungs had started to fill with fluid, an automatic cause for delivery. She was induced in the morning and gave birth to Charlotte around midnight. She was “born sleeping,” said Nickson.
“Basically, they have no idea why it happened, why it happened so early, or why I got sick,” Nickson said. “Even once we found out what it was, it was still really scary, because there’s no cure except for delivery. I was only 20 weeks. I had to make it to at least 24 weeks before they would do anything to try to save the baby. And then if you have a baby at 24 weeks, there’s a serious risk of death or lifelong disabilities. Even getting an answer, I don’t think was very helpful at the time.”
James likened those few weeks to an out-of-body experience.
“You’re there, everything is happening, but you’re just helpless to really do anything,” he said. “I just had to ride the wave, so to speak, with her. It’s one of those things, I still haven’t addressed that, because how do you? There’s no control over that. Life throws you some things that you just have to roll with. That was one of those situations. I have no control over it. All I could really do was be there to support her.”
Nickson had to stay on blood pressure medication for the next six weeks. After that, her health returned to normal. It was like nothing was ever wrong, she said.
‘We are moved by their story, moved to work towards a world in which preeclampsia no longer threatens the lives of moms and their babies.’
But beyond the physical, she and James sought emotional healing, too. They went to a few sessions of a pregnancy loss and grief support group, which helped early on. The most important element, though, was time.
“That was really helpful just to have the opportunity to share with people who had been through something similar and to see other couples,” Nickson said. “That was really important to see other people dealing with it. We’re both really individual people, so we do a lot of stuff on our own. Once we were in better places, our relationship was in a better place, too.”
Nickson was out of work for six weeks after delivering Charlotte. With not much to do at home, she immersed herself in research to help process her grief. That’s how she came across the Preeclampsia Foundation, and she and her family participated in their first Promise Walk in 2015. Since then, they’ve raised around $8,000 for the foundation.
“Like so many families impacted by preeclampsia, the Nicksons need to know they’re not alone and they need to be able to do something to make sure this doesn’t happen to other families,” said Eleni Tsigas, the executive director of the Preeclampsia Foundation. “We are moved by their story, moved to work towards a world in which preeclampsia no longer threatens the lives of moms and their babies.”
Nickson and a few other walk team captains had dinner with Tsigas, who also lost her daughter to preeclampsia during her first pregnancy, when she came to New Jersey for the local Promise Walk in 2015. Nickson has stayed in steady contact with the families since then, and they have plans to meet up with Tsigas is back in town this month.
She also found support on the babycenter.com message boards, where she met two women, one of them on a “Termination for Medical Reasons” forum. It turns out, both live nearby, and all three families have become close friends. That support played a big part in helping the Nicksons heal.
Their son helped with that, too. The younger James is a ball of energy, just about two years old and already growing into a big personality. During that pregnancy, Nickson didn’t develop preeclampsia, and James’s birth went smoothly. But Nickson said it was “absolutely terrifying” to be pregnant again.
Because preeclampsia has no set cause, she couldn’t do much different during her second pregnancy. Studies have show that baby aspirin during pregnancy can reduce the risk, so Nickson took a regular dose. She also alternated between seeing her OB/GYN and her renal hypertension doctor, even though her blood pressure was normal, just to be extra cautious.
“[James is] awesome,” Nickson said. “He’s fun. It can be sad sometimes because it’s like, ‘What did we miss out on?’ Seeing him walk or love books, every first thing that he does, it’s like, ‘What would Charlotte’s first things have looked like? What would she be interested in? What would her personality be like?’”
Those questions might not have answers. But Nickson hopes to honor Charlotte and answer other questions for expectant moms by continuing to raise preeclampsia awareness by sharing her story and working with the foundation.
“If I hadn’t been monitoring my blood pressure, I wouldn’t have known anything was wrong,” she said. “I didn’t feel sick. Even when I was in the hospital, I didn’t feel sick. I still felt okay until my lungs have filled with fluid. Education for people who need to look out for it is so important for pregnant women and the people around them. When people do hear about it, they often hear about it when it’s 37 weeks, so you just have the baby a couple of weeks early and everything’s okay. But people die. Babies die. It’s the No. 1 or No. 2 cause of maternal deaths, still. It has such a huge impact on society.”