Ruth Ngwaro coaches children with heart disease. Perhaps her most helpful advice is to tell her not to look too far ahead in her lifelong journey and instead focus on what she can do each day.
She would know: Throughout her childhood and adulthood, Ruth was in and out of hospitals in Kenya and the United States for treatment for various congenital heart defects (CHD). Although she did not know if her health would improve, she accepted her current situation.
Through the Boston Children and Adults Congenital Heart (BACH) program, she finally discovered how healthy she could be at age 33, at a time and place she never expected. The BACH program focuses on helping adults who need heart care from childhood onwards and has overseen Ruth’s recent treatment at the hospital. Now, she is stronger than ever and able to advance her own work advocating for the emotional care of people like her.
struggling to stay healthy
Born in Kenya, Ruth was diagnosed with CHD at 3 months old. Her heart has four holes, and her mitral valve also has one hole, which allows blood to move properly between the left atrium and left ventricle of her heart. . Kenyan surgeons thought her symptoms were too complex to treat her, but when she was 4 years old, an aid organization arranged for her to undergo two surgeries at a Maryland hospital. Ta. The four holes were repaired, but the mitral valve was left in place because doctors feared the replacement might rupture.
Upon returning home, Ruth immediately began to suffer. She got tired easily and she could not keep up with other children. “When she turned 11, my health was in such decline,” she recalls. Her mitral valve was leaking and a defect was discovered in her aortic valve, which controls the flow of oxygenated blood out of her heart.
The condition severely reduced blood flow throughout her body, but after surgeons in Nairobi, Kenya, implanted a replacement mitral valve and removed a tumor on her aortic valve, Ruth finally became healthy. I felt that. “My life really changed,” she says. She “caught up with the other kids and started going to school more often than before.”
But just when it seemed her heart problems were gone, she was later diagnosed with atrial fibrillation (AFib). AFib is a rare arrhythmia that occurs when the heart’s electrical signals cause the atria to tremble, causing the ventricles to function less efficiently. It took a while for doctors to find an atrial fibrillation drug that didn’t cause painful side effects. Ruth, 24, thought she would face difficulties throughout her life.
Find the care you need in Boston
Six years later, Ruth and her mother, Mary, moved to Boston. Ruth’s doctor and cardiologist recognized that she needed specialized care and referred her to Boston Children’s Hospital. After a surprising diagnosis by cardiologist Dr. Michael Singh, the BACH program’s inpatient director, Ruth underwent another mitral valve replacement when her first prosthesis turned out to be too small. The new valve works effectively.
Since 2020, he has also received treatment for atrial fibrillation. First, she underwent a surgery known as Maze (incidentally, it was performed on World Heart Day). This is a procedure that creates a “maze” of scar tissue that can stop faulty electrical signals. She then had a pacemaker implanted. Today Ruth feels better than ever. “She was really good,” she says. “My health has stabilized.”
Ruth sees Dr. Singh regularly. Dr. Audrey Dionne, Electrophysiologist. Nancy Barker, a physician assistant with the BACH program, was on hand for the test. “I have an amazing care team,” she says. “They always let me know what’s going on. They’re always there for me.”
Ruth plans her future with confidence
With her newfound strength, Ruth enjoys walking further than ever. And she’s confident she’ll have enough energy to study global health in college one day. It would be the perfect next chapter. She began her healthcare advocacy work as a young person in Kenya and continues to do so in Boston.
Among her many efforts to improve access to healthcare in Kenya, perhaps her proudest accomplishment was founding the Kenya Repair Heart Patients Association, which supports people with congenital heart disease and rheumatic heart disease. I’m sure it’s up and running. She currently serves as a patient consultant in the United States for initiatives advocating for chronic disease care in Africa and Asia.
She also communicates with other Kenyan immigrants in the United States and offers to help when the opportunity arises. One such moment came when she and her mother learned that a couple from Kenya would be bringing their young son, Prince, to Boston Children’s Hospital to be treated for a brain tumor. The Ngwaro couple invited his family to stay with him throughout his care. Prince is currently back in Kenya and doing well.
For Ruth, it was simply a way to give back. “The challenges you experience as a patient require a good support system,” she says. “Once you get through that, you can tell people about that challenge and help them get through it.”
Learn more about the Boston Adult Congenital Heart (BACH) program.
