Rare Heart Condition Affects Pregnant Women and New Mothers: A Local Mom’s Story

Danielle 1_Pregnant Women and New Moms
Danielle Johnson of Richmond and her daughters, Avani, Khia, Kayla, and Malaya

While bringing a baby into this world is amazing and life-changing, it’s important to pay attention to the mother’s health as it is to the new baby’s. Peripartum cardiomyopathy (PPCM), also known as postpartum cardiomyopathy, is a heart condition affecting pregnant and recently pregnant women that should be taken very seriously, as it can be fatal.

A local Richmond mother shares her experience with PPCM and how she’s working to overcome it.

Peripartum cardiomyopathy is a rare form of weakness of the heart that affects women during the final month of pregnancy until about five months post-delivery. It can be difficult to detect because its symptoms—swelling in the feet and legs and shortness of breath—mimic many of those of third trimester pregnancy. In Danielle Johnson’s case, it occurred in 2016, three weeks after delivering her third child.

Danielle, now a mother of four, was nearing the end of her third pregnancy when she knew something was off. With two healthy pregnancies in the past, she was experiencing major discomfort, shortness of breath, a rapid heart rate, high blood pressure, and exhaustion. These symptoms weren’t the usual changes a body endures during pregnancy, and she knew it. She visited a doctor and was told that she would feel better after her delivery – but she didn’t.

Three weeks after giving birth to her newborn daughter, Danielle felt like she was going to die. She couldn’t sleep, she couldn’t breathe and her heart was pounding. She rushed to the emergency department and was admitted to the hospital’s intensive care unit (ICU) after ED physicians could not get her rapid heart rate to return to normal levels.

While in the ICU, Danielle underwent many tests and was seen by Roberta C. Bogaev, M.D., FACC, FACP, chief of cardiology at the Bon Secours Heart and Vascular Program and medical director of Advanced Heart Failure and Mechanical Circulatory Support for Bon Secours. An echocardiogram was among the tests that were performed, and it was discovered that Danielle’s heart was only functioning at 10 percent — terrifying news for a mother who has children that depend on her. After reviewing Danielle’s symptoms and test results, Dr. Bogaev diagnosed Danielle with PPCM. Danielle was told by her team of physicians that if she had waited any longer to go to the emergency department, she may not have survived.

Danielle’s story is jarring, but she’s not alone.

Around 1,000 women are diagnosed with PPCM in the United States each year. Dr. Bogaev says the five most common symptoms to look for include:

  1. Extreme fatigue
  2. Prolonged swelling
  3. Severe shortness of breath (especially at night and when lying flat)
  4. Low blood pressure
  5. Heart palpitations

“Peripartum cardiomyopathy can go undiagnosed because there is much overlap with the symptoms of a normal pregnancy,” says Dr. Bogaev. She advises women to talk with their doctors about any severe breathing difficulties or fluid retention issues in the final month of pregnancy and the weeks and months after delivery.

“Women who have had PPCM should regularly see a cardiologist. With this serious condition, it’s important to continue to monitor heart function and discuss ongoing risk and medication use,” continues Dr. Bogaev.

Today, Danielle meets with Dr. Bogaev every 4-6 months and manages her treatment plan with a low sodium diet, daily exercise, and medication. She opts for a mix of walking and yoga to get in a full 60 minutes of activity every day. Danielle also does what she can to eat fresh whole fruits and vegetables and avoid red meat.

Danielle says her most important message to pregnant women and new mothers is simple: listen to your body and advocate for your health.

Danielle 2_Pregnant Women and New Moms“As women and mothers, we often put others needs above our own, but it’s so important to listen to your body. If something doesn’t feel right, get it checked out. Don’t wait,” she says.

Danielle shares her story to help raise awareness of PPCM and is thankful for the compassionate, quality care Dr. Bogaev provides as she plans to stay as healthy as possible for her girls: Avani, Khia, Kayla, and Malaya.

Bon Secours Advanced Heart Failure Center is central Virginia’s source for comprehensive treatment of advanced heart failure. Led by Dr. Bogaev, Bon Secours’ first cardiologist to be board certified in heart failure, we offer compassionate, leading–edge care. To learn more, visit https://bonsecours.com/richmond/find-a-provider/providers/practices/advanced-heart-failure-center.

Content for this article was provided by Bon Secours.