She thought her heart problems were over – until she got pregnant

Hypertrophic cardiomyopathy survivor Kacie Nowakowski with her newborn daughter, Madelyn. (Photo courtesy of Kacie Nowakowski)

Almost from the moment she learned to crawl, Kacie Nowakowski began doing somersaults around her house.

Her parents, noticing her high energy level and love of movement, enrolled her in gymnastics when she was 2 years old.

The class also ticked another box. Kacie’s pediatric cardiologist had suggested that she do high-intensity exercise to strengthen her heart.

Kacie was born with two heart problems: a hole that didn’t close after birth (ventricular septal defect) and a condition that thickens the heart muscle, potentially making it harder to pump blood (hypertrophic cardiomyopathy).

By age 7, Kacie was competing in gymnastics. At the height of her sport, she trained 25 hours a week. The beam was his favorite event.

She continued to see her pediatric cardiologist at least once a year for checkups. During her senior year of high school, the doctor discharged her, saying she was “in the clear.”

A few years later, Kacie quit competing in gymnastics and then became a coach. During the summers, she worked with children and adults at an outdoor sports camp on the Chesapeake Bay in Maryland. For fun, she climbed rocks, snowboarded, raced mountain bikes, and sailed.

Kacie Nowakowski sailing the Chesapeake Bay.  (Photo courtesy of Kacie Nowakowski)
Kacie Nowakowski windsurfing in the Chesapeake Bay. (Photo courtesy of Kacie Nowakowski)

In 2016, when Kacie was 24, she started experiencing occasional rapid heartbeats. They lasted about 15 to 25 seconds, once or twice a day, and only when she was at rest. Sometimes she felt weak.

At the time, her mother, Kimberly Kruger, was battling terminal colon cancer. Kacie and her father were the primary caregivers until her mother died in 2018.

Kacie’s primary care physician, believing the racing heart was related to the stress of caring for her mother, prescribed medication for anxiety. Despite his medical history, no diagnostic tests were ordered.

After several years of teaching in elementary school, Kacie earned a master’s degree in library science and began working as an elementary librarian. The heartbeats continued.

Last year, when Kacie was 29, she and her husband, Jacob Nowakowski, a firefighter, decided to start a family. The couple, who live just north of Baltimore, were overjoyed when she quickly became pregnant.

During her first checkup, her doctor wasn’t concerned about her heart history – until Kacie mentioned the occasional palpitations. He made her wear a heart monitoring patch for two weeks.

Looking at the results, the doctor told her she had an abnormal heartbeat – and it was serious.

Her pregnancy was now considered high risk. It meant a new doctor in a new facility. It also prompted his first echocardiogram in 13 years.

The test showed that the hypertrophic cardiomyopathy she was diagnosed with at birth had worsened, thickening her heart muscle. Related to this, she had several deficiencies in the left ventricle of her heart. The doctor said he was surprised she was able to keep up with his many high-intensity activities.

Due to Jacob’s work schedule, Kacie was alone when she heard the news, feeling shocked and overwhelmed. She sat on a couch in the hallway outside the doctor’s office and sobbed.

Kacie was told she needed to have a battery-powered device placed under her skin to track her heart rate and bring it back to normal if needed. This is called an implantable cardioverter defibrillator.

“Without it, you’re a flying trapeze artist with no net below you,” the doctor said. “It’s your lifeline.”

She received it in March, when she was 22 weeks pregnant. The procedure left her with chest pains so severe that she had to sleep sitting up for more than two months. She also couldn’t lift anything heavy or wash or dress herself for two weeks.

Two months before her due date, the couple were at an anniversary dinner with Kacie’s father and Jacob’s parents when a doctor called. He wanted to talk to them both. They left the noisy restaurant.

“That’s what’s going to happen during delivery,” the doctor said to Jacob. He explained that Kacie would deliver the baby via C-section from inside the cardiac operating room instead of a typical delivery room. In addition, she would recover in the cardiac intensive care unit.

“Your wife’s heart will be put to the test,” said the doctor. “It will have to be a very controlled environment.”

After the call, Kacie and Jacob leaned against the restaurant wall and cried.

When her father, Kurt Kruger, heard the news, it overwhelmed him on many levels – the challenge she faced now, as well as a flashback to when she was diagnosed as a baby.

He also knew she was up for the challenge. All those years of gymnastics training have strengthened her mind as well as her body.

“Kacie is my little bunny Energizer and filled with positivity,” he said. “She’s very regimented and always has a plan. I know that helped her.”

Kacie Nowakowski before her scheduled C-section.  (Photo courtesy of Kacie Nowakowski)
Kacie Nowakowski before her scheduled C-section. (Photo courtesy of Kacie Nowakowski)

All the planning worked.

Madelyn Nowakowski was born on July 30. Kacie, who had a stomach ache and was disoriented after giving birth, was monitored for 48 hours before she could see her baby.

“When I first held my daughter, I felt a soothing sensation,” Kacie said. “We did it. I did it for this child. My heart was steady and she was in my arms.”

Doctors detected that Madelyn had a heart murmur. They follow him closely.

As for Kacie’s heart, the delivery went so well that there is talk of allowing her to make Madelyn a big sister.

Doctors have said that while Kacie may eventually need heart surgery, it may take a few years. This will give her time to recover from this pregnancy and hopefully another.

“They want to be out of harm’s way if I’m stable and okay,” Kacie said.

Along with waiting at least a year before considering another pregnancy, Kacie has been told to cut out vigorous exercise such as high-intensity workouts and mountain biking.

Loving Madelyn is likely to keep her very busy.

“We have such a great relationship and bond,” she said. “It’s a nice gift.”

Stories from the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.

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