During Susan Mangini’s checkup at age 2, the doctor replacing her pediatrician asked about the girl’s heart murmur.
Mangini’s mother was amazed. No one had ever mentioned a problem with his daughter’s heart.
Doctors eventually discovered that the little girl had pulmonary stenosis, or a narrowing of the valve between her lower right heart chamber and the artery that carries blood to the lungs. She also had a large hole in the lower chamber of her heart.
This explained why Mangini’s skin sometimes had a slight blue tint to it.
Called “baby blue”, the color was a sign that she was not getting enough oxygen. This made her a candidate for what was experimental surgery at the time in the 1950s. However, her lack of oxygen contributed to her very slow growth. So, first, she had to gain weight.
Two years later, in 1959, when Mangini was 4 years old, she was one of the first children to undergo open-heart surgery to correct her pair of congenital heart defects.
During the five-hour surgery involving 10 doctors and using what was then a relatively new heart-lung machine, Dr. Alvin Merendino of Seattle, a pioneering cardiac surgeon, repaired the valve and the hole in his heart. . Mangini vividly remembers his time in the hospital.
“The doctor and my parents were talking in the hallway after the operation, and my dad asked the doctor, ‘What are his chances of living to adulthood?'” said Mangini, who is now 67. and lives in Los Angeles. “Before the doctor answered, he closed the door, so I couldn’t hear. After that, I felt like I was going to die in my sleep.”
Instead, Mangini returned just in time to have a Merry Christmas.
She still has the photo album her mother kept with scribbled notes in the margins. A note read: “She is now a healthy 6-year-old. Except she is a little breathless from the activity.”
The story of Mangini’s breakthrough surgery made headlines at the time. She was celebrated at various American Heart Association events throughout the 1960s.
Mangini remembers when she was crowned the AHA Queen of Hearts for Washington State. She took part in a Christmas parade in a red convertible with other children who had undergone various open-heart surgeries.
When her family moved to Kern County, California, the AHA named her Little Miss Heart Sunday and she made local headlines. She also had lunch with the city’s mayor. In Mangini’s album, her mother notes that the AHA has shared her photo across the country.
At age 7, Mangini caught pneumonia and was hospitalized. She then caught meningitis, which caused minor brain damage and partial hearing loss. Despite this, she persevered in school.
She was a cheerleader in middle school and high school. She earned a certificate in Early Childhood Care and Development, taught preschool, and worked at a foundation for children and adults with disabilities.
“She did a lot with what she was dealing with,” said Caroline Hatfield, her older sister and now housemate.
Yet over the years, Mangini would tire quickly, even when doing simple household chores.
“I should sit down and rest to gather my strength before moving on to the next task,” she said.
In the 80s, her cardiologist found another hole, this time in the upper chamber of her heart. The doctor, however, told Mangini that the hole was so small it was insignificant. They kept checking it every few years.
“They always said, ‘Don’t worry about it,'” Hatfield said.
Last year, Hatfield took Mangini for an appointment with her primary care doctor. Usually the sisters walk the block and a half to the office after parking, then linger in the waiting room.
That day, the doctor immediately saw Mangini. When a nurse measured his blood oxygen level with a pulse oximeter, it was so dangerously low that the doctor said, “I don’t even know how you’re sitting there.
Although Mangini’s oxygen levels had normalized before she went home that day, her doctor referred her to a pulmonologist. The specialist found nothing wrong with his lungs, ordered him oxygen and told him to make an appointment with his cardiologist.
The cardiologist suggested surgery to close the second hole in his heart.
The hole ended up being much bigger than expected. Due to the position of the hole, previous views only saw a small piece of it.
“He was hiding,” Hatfield said.
Immediately after the operation, Mangini no longer needed oxygen.
“I don’t need to rest anymore,” Mangini said. “I can just move on to the next task. I feel so much better. I have so much energy. For the first time in my life, I feel normal.”
She continues to see her cardiologist regularly. She enjoys walking around their neighborhood several times a week and no longer has terrible persistent headaches after long runs. “It’s manageable now,” she said.
Mangini is still proud to have been one of the first children to undergo open heart surgery. She treasures her red album and often shares it with her doctors. After her experience, she advises others to pay close attention to any strange and persistent symptoms and talk about them.
His advice: “Listen to your body.
Stories from the Heart chronicles the inspiring journeys of heart disease and stroke survivors, caregivers and advocates.
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