When Jessica Diede was about 20 weeks pregnant with her second child, she developed worrisome symptoms. The then 27-year-old felt short of breath and noticed that her legs were swollen and her heart would sometimes gallop wildly, making it feel as if her entire body were throbbing. When she was 27 weeks pregnant, her cardiologist shared devastating news.
“They said, ‘You’re healthy, you look healthy, but your heart is failing.’ And I said, ‘What?!’ I did not expect that at all,” Diede, now 30, of Phoenix, told TODAY. “It just felt like everything was at a pause, like all motion stopped and I just said, ‘Wow, so, now what?’”
Diede had peripartum cardiomyopathy, a rare type of heart failure that occurs in late pregnancy and up to five months after delivery, according to the American Heart Association. She had never realized that something like this could happen to pregnant women, which is why she’s sharing her story.
“I was very scared. I didn’t want to die. I wanted to see my son and that was what keep me going and pushing,” she said. “I had to fight so that I could live.”
When pregnancy symptoms become something more
During her first pregnancy Diede developed gestational diabetes and preeclampsia. When she became pregnant a second time, she worried that she might develop those conditions again. When she first saw her swollen legs around 20 weeks, she knew that could just be a part of pregnancy. But the racing heartbeat worried her: It only felt better when she laid on her left side. She visited her OB-GYN who said it was likely anxiety.
“I had a history of anxiety. I have no family history of heart disease,” she said. “I was like, ‘No, there’s no way that this is anxiety. Anxiety doesn’t go away when you make certain movements.’”
Her doctor gave her a referral to a cardiologist and she underwent an echocardiogram. When she returned for her follow-up, she realized her condition was graver than she imagined.
“The doctor warmed me, ‘You know if your heart gets any worse … your heart is going to completely fail in delivery and you will either need a heart transplant or worse,’” she said. “That was a big eye opener for me. So, I took the medication.”
Even with medication, Diede’s condition worsened.
“I had to be in a wheelchair for at least six weeks and if I wasn’t in a wheelchair I was in the hospital because I couldn’t breathe. I couldn’t lay flat. It was a real struggle,” she said. “I was induced at 34 weeks.”
Her son, Remington, spent a few weeks in the neonatal intensive care unit for observation because he was early. While she did not require a transplant, she underwent several heart procedures over the next two years to help her erratic heartbeat. She was diagnosed with atrioventricular nodal reentrant tachycardia, “an extra electrical pathway” in her heart, and had an ablation, which blocks that pathway causing the irregular heartbeats.
“It took about two years after birth for me to start feeling a little bit better,” Diede said. “I had to get a heart ablation. They cauterized my heart because I was still having those fast heart beats.”
She asked her doctors why pregnancy started heart failure and they admitted there was just not enough research to understand it. The AHA notes that underlying causes for peripartum cardiomyopathy are unclear, but could include poor nutrition, coronary artery spasm, small-vessel disease and more. Genetics may also play a role in the condition.
“Nobody’s ever given me a direct answer why my heart decided to do that when I was pregnant,” she said. “They told me that if I have another child that my heart wouldn’t do well. I can’t have any more kids.”
Becoming an advocate
While she’s taking a beta blocker, Diede’s life has somewhat returned to normal. She takes photographs, walks, exercises and chases after a spunky 3-year-old. She is a member of the American Heart Association’s 2021 class of “Go Red for Women Real Women” to help pregnant and postpartum women understand their risk of heart disease. She hopes others trust their instinct when something seems wrong.
“If you feel like something’s not right, just trust yourself, trust your body and push for answers,” she said. “I want women to feel like they have a voice.”
She’s glad she received the proper diagnosis and wants others to seek second opinions when needed. Thanks to her persistence she should have many healthy years ahead of her.
“I’m doing much better today,” she said. “With diet, exercise and keeping up with my cardiologist, it should be smooth sailing.”