Adult congenital heart patient finds the right care

Born in Tunisia, Africa, Maram Chaabane started consistently getting sick around 3 years old. Every doctor told Maram’s parents that she had the flu – even in the middle of the summer. The doctors would prescribe antibiotics, but nothing seemed to help.

“Finally, a family doctor mentioned my heart and told my parents to take me to a cardiologist,” Maram said.

After an examination from a local cardiologist in Tunisia, the doctor concluded Maram had ventricular septal defect – a congenital heart defect Maram was born with – and would require open heart surgery.

After her surgery in France, Maram continued to follow up with her cardiologist on an annual basis.

“When I was about 8 years old, the cardiologist told my family and me that I wouldn’t need to see him anymore,” Maram said. “He informed us my heart was healthy, and I could lead a normal life.”

Unfortunately for Maram that wouldn’t be the case. Some 25 years later, she would find out that her heart was anything but healthy.

A difficult nine months

In 2009, Maram and her husband, Francois, were expecting their first child.

“As soon as I found out I was pregnant, I immediately went to see a cardiologist,” Maram said. “I wanted to make sure everything was going to be OK carrying a baby with my heart history. The cardiologist assured me it would be fine.”

Maram’s pregnancy was difficult – she was tired, had swelling issues and felt like she was going to pass out often. But she blamed it on normal pregnancy side effects – not thinking it was anything to do with her heart.

To be safe, the cardiologist preformed an echocardiogram – a sonogram of the heart. The results? According to the cardiologist, Maram’s heart looked great.

On August 6, 2009, Maram’s son was born. But it wasn’t the experience Maram was hoping for.

“I honestly don’t remember much about the delivery,” she said. “I couldn’t even hold my baby because I was so tired and exhausted.”

One year later, Maram and her family moved to Peru, Illinois, so she could help take care of her sick father.

The right care

In 2015, Maram was expecting her second child. As with her first pregnancy, Maram needed another echocardiogram to check the status of her heart. She went to OSF HealthCare Saint Elizabeth Medical Center in Ottawa, Illinois, to get the test done.

Like most of Maram’s echocardiograms in the past, she was expecting the appointment to go well. But she would soon realize this appointment would change her life forever.

“The radiology tech kept going in and out of the room as she was doing my echocardiogram,” Maram said. “At that point, I knew something wasn’t right.”

The radiology technician asked Maram if she could send the echocardiogram results to an OSF HealthCare doctor, and they would call her later that day.

Two hours later, Maram received a phone call from the Congenital Heart Center at OSF HealthCare Children’s Hospital of Illinois in Peoria asking her to come to an appointment the next morning.

“I remember being scared when I called my mom and sister saying it’s probably something serious and could change everything,” Maram said.

Maram was right.

A life-changing discovery

The couple arrived to the appointment where they met Dr. Marc Knepp – adult congenital heart physician.

Dr. Knepp informed Maram that she was indeed born with a congenital heart defect, and it would be something she would need continuous care for the rest of her life. He also said her pulmonary valve would need to be replaced after her son was born.

“I told Dr. Knepp, ‘Yes, I know I was born with it, but it was fixed a long time ago,’” Maram said. “I didn’t realize I would live with the problem my whole life.”

Maram’s pregnancy was considered high risk with her heart condition. Dr. Knepp and maternal-fetal physician, Dr. Michael Leonardi, would monitor her closely throughout the duration of her pregnancy.

Dr. Knepp put Maram on a medication, which helped with her energy levels.

“My second pregnancy compared to my first was like night and day,” Maram said. “I had so much more energy. I think most of the side effects from my first pregnancy were because of my heart.”

Maram also appreciated Dr. Knepp’s responsiveness to her.

“I would call the Congenital Heart Center frequently with questions or concerns,” Maram said. “Dr. Knepp himself would call me back quickly. I knew that if something happened, I would have someone to take good care of me.”

A smoother delivery

At 37 weeks pregnant, Maram woke up at 5 a.m. and couldn’t breathe. Maram’s husband drove her to their community hospital in Peru.

Immediately, an OSF Life Flight helicopter came to pick Maram up to take her to OSF HealthCare Saint Francis Medical Center in Peoria to deliver her son.

“I’ll never forget as we were coming into Saint Francis, it was raining and there was a team of people waiting on the helicopter pad,” Maram said. “They were all waiting for me. I couldn’t believe it. It was like a scene out of a movie.”

The team rushed Maram to the operating room where they were able to deliver a healthy baby boy with a healthy mom.

“I felt safe when I saw all these faces I had been seeing over the last several months who had cared for me and my baby,” Maram said. “Each person knew exactly what they needed to do.”

Congenital heart specialist

On November 10, 2015, four months after giving birth, Maram was finally ready to have the open heart surgery she needed for years. The six-hour surgery was performed at OSF Children’s Hospital by Dr. Mark Plunkett, congenital heart surgeon.

“Dr. Knepp said I would have a lot more energy after surgery, and I didn’t believe him,” Maram said. “But he was right – I felt so much better.”

Maram’s advice to others who have had heart issues as a child was clear – go to a congenital heart specialist.

“Congenital heart specialists know what to look for when it comes to our specific condition,” Maram said. “OSF HealthCare was able to provide the expertise for all of my care throughout my pregnancy and heart surgery.”