Mom, 32, had a life-threatening pregnancy complication. Doctors dismissed the signs for weeks
When Lindsay Orr, then 32, was 30 weeks and 5 days pregnant, she started seeing stars in her vision.
“They would happen once a day, so just randomly,” Orr, 34, of Denver tells TODAY.com. “I started having severe leg swelling, where I could push down on my leg and (the indentation) would stay there for 30 minutes or so. I started having intermittent headaches.”
Orr, a nurse practitioner specializing in cardiac care, started tracking her symptoms to share with her doctor. One day, after listening to a pregnancy podcast, she got a hunch about what might be wrong. Her symptoms aligned with preeclampsia, a life-threatening condition marked by high blood pressure that develops after 20 weeks of pregnancy and protein in the urine. It can lead to seizures, known as eclampsia.
She visited the emergency room, where a doctor dismissed her and said she had gestational hypertension, high blood pressure in pregnancy that is milder than preeclampsia but can turn into it.
“I told the doctor … that I was seeing stars in my vision, and his answer to that was that we all see stars sometimes,” she recalls. “I had that leg swelling that was really severe, and he said that it’s July, and all women who are pregnant have some kind of leg swelling.” Orr visited the emergency room four more times, with doctors downplaying her symptoms each time. Finally, at an OB-GYN appointment, she asked to see a maternal-fetal medicine specialist because she was worried about her risk of seizures. She was admitted to the hospital.
“I showed the maternal-fetal medicine doctor my blood pressure readings,” she says. “He said many of them met the criteria for severe preeclampsia and induction. And he said that the headaches that (I) have been experiencing are the biggest predictor for a progression to eclampsia, which can be deadly. The doctor said, ‘I’m inducing you right now.’”
Healthy, active life before pregnancy
On weekends, before Orr got pregnant, she and her husband hiked, including six "fourteeners," mountains at least 14,000 feet high. Often, she visited the local Orangetheory for HIIT workouts and had completed several half marathons and one full one.
“I was in very good shape, cardiac-wise and overall,” she says.
On New Year’s Day 2022, Orr learned she was pregnant with her first child. While thrilled, she experienced some serious nausea and lost about 10 pounds in her first trimester. Still, everything seemed fairly normal during pregnancy, until June when she developed severe perinatal depression and anxiety.
“I was pulled out of work and just trying to focus on myself and relaxing and getting my mood under control, seeking therapy,” she recalls.
In early July, Orr began seeing stars in her vision. She also noticed the extreme leg swelling and felt bothered by headaches.
After listening to the podcast on preeclampsia, she took her blood pressure, and it was 130/100 — 140/90 or higher is considered high blood pressure in pregnancy, according to Mayo Clinic. She took it again, and it was 152/106.
“Those numbers never went down,” she says.
Two days after the stars started, Orr went to the emergency room at the advice of an OB in her doctor's practice, who said she should prepare for an early delivery.
But doctors in the emergency department explained away many of the symptoms Orr experienced.
“(They) told me just to keep an eye on (my) blood pressure,” she says. “I was told it was high because of my anxiety.”
At home, Orr continued monitoring her blood pressure and other symptoms. Her headaches were becoming persistent, severe and did not improve with medication.
“Nothing ever got better. I just continued to get worse," she says.
Over the next two weeks, she went to the ER four more times. “Each time I was sent home (with doctors) saying that my symptoms were borderline preeclampsia," she explains.
One evening, Orr was lying in bed panicked about the symptoms she had.
“I was so worried that I was going to have a seizure from all of this and being ignored that (I thought) my husband was going to wake up and find me dead,” she recalls.
At a regular appointment with her OB, Orr asked to see a maternal-fetal medicine specialist. The doctor gave her an option to either make an appointment a week later or be admitted to the hospital to see the specialist right then. She opted for the latter.
Orr was induced the same day and she gave birth to her son, Hudson, the following day, July 27, 2022, at 32 weeks and 5 days pregnant.
“Throughout my pregnancy (I often heard) the phrase, ‘You’re so borderline. This is a difficult case.’ … I was told that again and again," she recalls.
What is preeclampsia?
Preeclampsia is a sometimes deadly pregnancy complication characterized by elevated blood pressure toward the end of pregnancy, which can lead to other dangerous symptoms, explains Dr. Dallas Reed, OB-GYN, geneticist and advisor to Mirvie, a biotech company developing tests to detect pregnancy complications earlier.
Most notably, patients with preeclampsia have protein in their urine, what doctors call proteinuria, which can indicate kidney and other organ problems, Reed tells TODAY.com. They're also at risk of bleeding problems with delivery.
Reed says signs of preeclampsia include:
A headache that will not go away even with Tylenol
Blurry vision, double vision, spots or stars in the eyes
Chest pain
Trouble breathing
Swelling especially in the hands or face
Nausea or vomiting
“What is very concerning about preeclampsia is that if it is not treated, it can develop into eclampsia, which is when you have all those (symptoms) and then seizures,” Reed says, adding that the high blood pressure that comes with it can also lead to stroke.
Some people are at greater risk than others, she says, and this includes people who:
Are of advanced maternal age
Have a history of hypertension
Have had preeclampsia in the past
Have an elevated BMI
Have chronic kidney disease
Are African American
Reed adds that research has found that Black people often have cardiovascular health problems because of the impact structural racism has on them.
People at greater risk of developing preeclampsia should monitor their blood pressure with a cuff at home, she advises. If patients have blood pressure readings of 140/90 or higher, they should call their doctor or visit an emergency room.
“They don’t both have to be above that mark,” Reed clarifies. “It could be 140/80, and that’s considered an elevated blood pressure.”
Experts don’t quite understand why preeclampsia occurs, says Dr. Michal Elovitz, dean of Women’s Health Research at the Icahn School of Medicine at Mount Sinai and senior medical advisor for Mirvie. She says a lack of funding for women’s health and a wariness to include pregnant people in research makes it difficult to investigate underlying causes of preeclampsia.
For example, experts believe the placenta may play a big role in developing preeclampsia, but it's "problematic" to study the placenta in an ongoing pregnancy, she tells TODAY.com. Studying it after birth is possible, but adds little clarity because if researchers find anything abnormal in the placenta, it's impossible to know if it developed before or after the preeclampsia.
Current lab tests can detect increased protein in the urine to diagnose preeclampsia, but symptoms can progress rapidly, placing the mom and baby at risk until the baby is delivered. Knowing a person’s risk for preeclampsia before protein is in the urine could allow for closer monitoring and treatments before an emergency.
Mirvie is developing a test to detect preeclampsia looking at changes in the blood. Better testing will help more people be diagnosed earlier and also could help experts develop better treatments for it.
“Having a test that can tell you you’re at risk, to me, is a tremendous advancement,” Elovitz says. “It’s also ultimately the goal to prevent or limit the negative outcomes.”
Motherhood
Hudson was small when he was born — 4 pounds, 3 ounces — and needed oxygen and a feeding tube for the first two weeks of life. But after 13 days in the neonatal intensive care unit, he was discharged.
“He continued to be a little behind for the first couple months of life, both developmentally and weight wise,” Orr says. “I would say he slowly and then quickly caught up.”
Orr grappled with severe postpartum depression and anxiety and was eventually diagnosed with postpartum PTSD.
“I was having flashbacks of this experience and dreams of being pregnant and not being listened to,” she says. “Those are things I’m still even to this day, 21 months postpartum, dealing with through therapy.”
Her blood pressure is still elevated, but she was able to stop taking medication for the time being. Being dismissed changed Orr.
“I have a severe distrust in the medical system, which is really difficult especially as I work in the medical system,” she says. “I’m terrified of missing anything or diminishing any of their symptoms.”
Orr says she hopes others hear her story and feel encouraged to speak up about their health.
“The biggest thing is continuing to advocate for yourself even if others are not listening,” she says. “If something feels wrong keep advocating for yourself.”
This article was originally published on TODAY.com
