Adult congenital heart patient finds the right care

Maram and her familyBorn 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.”

Making the complex simple

As part of the Performance Improvement (PI) team, it’s our role to come up with simple solutions to improve the way care is delivered within our facilities. We’ve traditionally achieved this by gathering information from subject matter experts on projects over a period of months until we had enough data to craft new Solution Design and Integrationprocesses we could put into place. While successful, this methodology is complex and time-consuming. As part of the overall OSF Innovation umbrella, we wanted to come up with a way to speed up this process to deliver solutions in a much quicker fashion.

As a result, we formed a group that could do this type of work day in and day out called the Solution Design and Integration team. This collaborative, made up of various disciplines, includes PI, patient experience, clinical education, clinical practice, clinical integration and healthcare analytics. We also bring on ad hoc members who are well-versed in whatever issues we are trying to tackle.

The goal of this team is simple: come into work every day in a common environment and stay focused on a particular challenge for up to 20 business days, using design-thinking, innovation, PI and agile tools until a solution is developed.

How does Solution Design and Integration work?

On day one of the Solution Design and Integration team coming together on a particular project, members hold a kick-off session with subject matter experts (SMEs) to learn more about the challenge they are looking to solve. Using design-thinking tools, we brainstorm for an entire work day to come up with high-level solutions.

We then go through each of these solutions to detail out what they would look like in practice, getting feedback from SMEs along the way. A final recommendation is then presented to the SMEs, along with education and test of change plans. The solution then goes to leadership for approval.

Our first design challenge centered on scheduling patients who have suffered heart failure for a follow-up appointment within five days of being discharged from a hospital. Evidence shows that patients who visit their provider within those five days have a decreased chance of returning to the hospital because they are better equipped to manage their illness.

The solution our team devised was to give the scheduling responsibility to a patient’s case manager who is already a part of the patient’s care team and can collaborate with him or her to find an open slot on a provider’s schedule. This is instead of leaving the role to an outside scheduler who doesn’t know the patient in question.

This solution developed by the Solution Design and Integration team has been tested at two OSF HealthCare hospitals with great success, and we’ve recently received approval to add a few other facilities to this pilot program before full implementation. Completing multiple tests of change is important before rolling an initiative out Ministry wide, so improvements can be made along the way.

This team is working on coming up with solutions on at least four other issues.

Perfecting the Model

As we continue to go through each design challenge, we are having feedback sessions with the team to learn what has worked well and what needs to change. That includes adjusting our meeting schedule to ensure team members have enough time to maintain their other job responsibilities and determining how long each project design should take. We also want to ensure we are leaving enough time for our team to sufficiently train those impacted by our solutions.

Overall, we believe this way of working allows us to fail faster, succeed sooner and develop solutions that are improving care delivery and patient outcomes.

Knowing family history can help with heart disease

Rebecca Hansen of Dunlap, Illinois, did everything right to stay heart healthy. She worked out five times a week, ate a nutritious diet and went to regular checkups with her doctor.

With a strong family history of heart disease, she knew she was still susceptible to heart-related conditions – a fact she never wanted to come true.

But around 2 a.m. on February 4, 2014, Rebecca had to face the harsh reality that genetics don’t exactly play fair.

Genetics came knocking

Rebecca Hansen and her husbandRebecca woke up with intense pain in her arm, similar “to someone running over my arm with a car.” With no other symptoms, she attributed the pain to exercise.

“I had been doing kick boxing classes, and I thought I had done something to my shoulder nerve or my rotator cuff,” Rebecca said. “I put ice on it and thought that would take care of it.”

But when the pain didn’t get better, Rebecca decided to go to an OSF PromptCare.

“Just before leaving to go to the PromptCare, I started feeling pain in my chest,” Rebecca said. “But I have had panic attacks before, and that’s exactly what the chest pain felt like.”

OSF PromptCare performed an electrocardiogram (EKG) – a test to show the electrical activity of the heart. The EKG didn’t specifically show a heart attack, but didn’t look normal. That’s when the care team at OSF PromptCare decided to send Rebecca to OSF HealthCare Saint Francis Medical Center by ambulance.

“I was in disbelief,” Rebecca said. “I didn’t think it was possible I was having a heart attack. I was 38 at the time and did everything I was supposed to do to stay healthy.”

When in doubt, check it out

When she arrived to OSF Saint Francis, a sonogram was immediately taken of Rebecca’s heart. The sonogram showed Rebecca’s left descending artery was 100 percent blocked, which meant Rebecca was having a heart attack.

She was immediately rushed into surgery for a procedure called an angioplasty. The procedure opens the blocked artery, restoring blood flow to the heart.

“My advice to others is to get something checked out if it doesn’t feel right or feels different than normal,” Rebecca said. “I think as moms and busy, working women, we brush things off as no big deal.”

After Rebecca recovered from surgery, she went to a cardiac rehab program three times a week for six weeks at the RiverPlex in Peoria. The program helps a patients recovering from a heart attack build strength in their heart muscle again.

Today, Rebecca is back to her regular exercise routine and sees a cardiologist annually to help monitor her heart.

“Every day I’m thankful,” she said.

Eight-year-old with blood disorder dreams of helping others

8-year-old Ru AblaRu Abla is your typical 8-year-old. She is a spirited, fun-loving, vibrant little girl with big dreams. But what you might not suspect is that she and her mother, Sandra, make the 1 ½-hour drive from Decatur, Illinois, to St. Jude Midwest Affiliate at OSF HealthCare Children’s Hospital of Illinois in Peoria every four weeks. Why?

Ru was born with an inherited blood disorder called beta thalassemia major, also called Cooley’s anemia. Considered rare in the United States, the blood disorder predominately affects those of Mediterranean, Asian or African ancestry.

Beta thalassemia major prevents the body from making red blood cells. Therefore, Ru requires continued blood transfusions to receive healthy red blood cells.

Finding the right care

When Marc and Sandra Abla were deciding where they would seek treatment for their daughter, Ru, they turned to their good friends, who also had a daughter with the same condition.

“My friend said, ‘Oh, you need to check out St. Jude at OSF Children’s Hospital,” Sandra said.

Since then, the Ablas have been pleased with their decision.

St. Jude Midwest Affiliate Clinic has been serving children, teens and young adults in Illinois and neighboring states with cancer and blood-related disorders for over 40 years. It was the nation’s first St. Jude-affiliated clinic.

“The St. Jude Clinic at OSF Children’s Hospital has been a huge blessing to us, both financially and emotionally,” Sandra said. “Ru has had very little trauma or emotional struggles with her treatment because of the way they deliver care.”

Dr. Mary Beth Ross – a pediatric hematologist – has been caring for Ru since she started treatment at St. Jude.

“She listens to our needs and concerns and is constantly looking into new ideas and studies to make treatment even easier,” Sandra said.

Making treatment fun

Because St. Jude caters to children, teens and young adults, the clinic has a unique approach to how care is delivered.

Depending on the type of treatment, most kids can do arts and crafts, watch movies, play in the playroom or do other interactive activities while receiving their treatments.

“I love that Ru isn’t confined to her bed during her transfusions,” Sandra said. “I know some other children with beta thalassemia, who seek treatment at other hospitals, and they are confined to their beds for the duration of their treatment because of hospital policy.”

Aside from Ru needing blood transfusions every four weeks at the clinic in Peoria, she also goes to St. Jude Children’s Research Hospital in Memphis once a year to get an MRI of her heart and liver to check for iron deposits.

Iron is a natural product of the blood, and the body has no functional way of getting rid of it. So when someone has blood transfusions on a continual basis, they receive extra iron the body doesn’t need. If the body stores too much iron, it could lead to organ failure. Therefore, Ru takes medication to pull the extra iron out of her blood. As a precaution, the MRI checks that there is no iron being stored in her heart and liver.

“That’s one of Dr. Ross’s goals is to have the MRI software available in Peoria to save us the annual trip to Memphis,” Sandra said.

Ru’s outlook on life is certainly one to learn from. Her infectious smile and upbeat attitude would make anyone’s bad day turn into a good day. When asked what her plans are for the future, Ru said there are so many possibilities. But she ultimately wants to do something to help people someday.

“My hope is that she grows up happy and healthy, has a strong faith in God and goes after her dreams and what she wants to be,” Sandra said.

Diabetes puts people at greater risk for heart disease

man tests diabetes blood sugarDid you know that people with type 2 diabetes are two to six times more likely to die from a heart attack or stroke? Scary, isn’t it?

People with diabetes are at greater risk for heart disease because, over time, high blood sugar can damage blood vessels and nerves that control the heart. The longer you have diabetes, the higher your chances are to develop heart disease. And those with diabetes tend to develop heart disease at a younger age than people without diabetes.

In adults with type 2 diabetes, the most common causes of death are heart disease and stroke. You are still at risk for a heart attack or stroke even if you are at your A1C goal. The good news is that the steps you take to manage your diabetes also help lower your chances of having heart disease or stroke.

Other factors such as smoking, high blood pressure, high cholesterol and high triglycerides (blood fat), family history of heart disease, excess weight and a sedentary lifestyle contribute to a the risk for heart disease or stroke. You can’t change your family history, your age, or the fact that you have diabetes.

Lower your risk

You can decrease your risk for heart attack or stroke by impacting these other risk factors. Smoking, as well as diabetes, narrows blood vessels. Quitting smoking can lower your risk for heart attack, stroke, nerve and kidney disease, eye disease and amputation. Blood sugar, blood pressure and cholesterol levels may also improve. Your circulation will improve and you may have an easier time being physically active. Start by calling the national QUITLINE at 1-800-QUITNOW (1-800-784-8669) or go to

Managing your blood pressure helps reduce the strain on your heart to pump blood. High blood pressure also increases your risk for eye and kidney problems. The American Diabetes Association recommends maintaining blood pressure at 140/80 or lower.

Cholesterol can build up and clog blood vessels. High levels of LDL cholesterol and high triglycerides raise your risk for developing heart disease. You can lower your cholesterol and triglycerides by eating a lower fat diet, choosing unsaturated fats over saturated fats, and eliminating transfat. Many people with diabetes also take a cholesterol-lowering medication.

Being overweight can affect your ability to manage your diabetes as well as increase your risk for heart disease and high blood pressure. Meal plans that includes a variety of foods, whole grains, fruits and vegetables and getting a moderate amount of physical activity most days of the week can help you manage your weight. A goal of 5 percent to 7 percent weight loss is reasonable and will yield healthful results

High levels of blood glucose can harm your heart, blood vessels, kidneys, feet and eyes. Maintaining A1C at target helps decrease your risk of complications. A1C goal for most people with diabetes is below 7 percent. Ask your health care team what your goal for A1C, blood pressure and cholesterol should be.

Lastly, get enough sleep. Manage your stress levels. Have some fun. Laugh. These can help you feel better and keep you healthier.