Beyond Ventricular Septal Defect (VSD): Kiki’s Story
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A week after baby Kikiolaoluwa was born, her doctors in Nigeria found a hole in her heart.
At first, they told Kiki’s parents – mom Moninuola and dad Oladapo – to wait and see if the hole closed on its own. But several months later, everything was worse. Kiki was losing weight. She was often soaked in sweat just from the effort of breathing. The doctors’ plan changed: She needed immediate surgery. Moninuola and Oladapo’s hearts dropped.
“In Nigeria, you can’t get things like that,” says Moninuola. “Less than 10 hospitals in the entire country could do the surgery.” The wait list was around 200 patients long.
Oladapo was already living in Connecticut, and the family’s plan had been to wait out the pandemic before Moninuola and Kiki joined him. Now, they decided to risk the trip, scrambling to get passports and travel visas in order.
In December, 5-month-old Kiki arrived in the U.S., and at Connecticut Children’s Emergency Department (ED). After the excruciating months of waiting, worrying and crossing an ocean, she would get the care she needed.
“This is what I’ve been waiting for”
Pediatric cardiologist Joseph Kuruvilla, DO, FAAP, greeted the family in the ED, and stepped in to coordinate every aspect of Kiki’s care. Experts from Connecticut Children’s Heart Centerworked quickly to get the full picture of Kiki’s diagnosis. They used anechocardiogramto take detailed images of her heart, and threaded acatheter through her blood vessels to study everything more closely.
It turned out that Kiki was battling with more just than the hole in her heart, a ventricular septal defect (VSD). Her aorta, the main artery carrying blood from the heart, was also too narrow in one place, a condition known as aortic coarctation. As a result, her heart was sending too much blood to her lungs, and not enough to the rest of her body. She was in congestive heart failure.
Cases like Kiki’s require lots of different experts. And Connecticut Children’s, with more than 30 pediatric specialties, brings them together as one team for patients. In the Heart Center, Kiki’s care team included specialists in cardiology, congenital heart surgery, the pediatric intensive care unit and pediatric hospital medicine, among others. They worked side by side to take care of Kiki and come up with a plan.
A few days later, congenital cardiac surgeonDennis M. Mello, MD, performed open-heart surgery, leading a team known for complex heart surgeries on even the tiniest babies. As Moninuola and Oladapo followed their daughter's care, Dr. Mello patched the hole between the lower chambers of Kiki’s heart. Then they detached the aorta, carefully removed the narrowed portion, and reattached it to healthy tissue.
After seven hours, the surgery was complete. Moninuola remembers thinking, “Wow. This is what I’ve been waiting for, the past five months. And in a week it’s done. Wow.”
“They are changing the world”
Today, at age 1, Kiki is thriving. She’s gaining weight and meeting all of her developmental milestones. She’s bright and funny and curious. When Moninuola and Oladapo look at pictures from a year ago, they’re amazed. “I’m grateful to God that she pulled through and is growing up well,” says Oladapo.
The cutting-edge techniques that saved Kiki are allowing more and more children with congenital heart defects to grow into healthy adults – as long as they have access to the specialists and treatments they need. As the state’s only health system 100% dedicated to kids, Connecticut Children’s is committed to bringing these services closer to every child in the region. That includes offering convenientlocations and Video Visits, and forging Care Alliance partnerships with adult health systems.
But it’s also about providing care that’s truly special for kids and families.
“The staff are amazing,” says Oladapo. “They really put their all into every patient.”
That first night in the ED, Moninuola remembers Dr. Kuruvilla giving her hope. She remembers the cleaning person who always checked to make sure she’d eaten something, and the security guards who cheered on Kiki’s recovery. She remembers walking into Kiki’s room and finding a nurse sitting by the bedside, comforting Kiki just the way she would herself.
“The people at Connecticut Children’s are angels in human form,” says Moninuola. “I can’t imagine how many children they’ve helped. A lot of children are going to be great things in the future, and it’s all possible because of them. They are changing the world.”
