Although heart warrior journeys sometimes start out in unexpected ways, watching their children overcome great challenges never fails to inspire parents and families, as well as the providers who care for them. Mahnya, whose twin daughters were born at 32 weeks — one with a serious CHD — says she is amazed by how far her kids have come and who they are today.
Kai, who weighed just 2 pounds 11 ounces at birth, was diagnosed with Tetralogy of Fallot with Pulmonary Stenosis and Ventricular Septal Defect (VSD). Doctors later discovered she also has premature ventricular contractions (PVCs), which are extra heartbeats that begin in one of the heart’s two lower pumping chambers. Kai stayed in the hospital for three months after she was born and received a Blalock-Taussig (BT) shunt in December 2020 and a Tetralogy of Fallot full heart repair the following June.
During Kai’s time in the hospital, Mahnya juggled caring for her along with Kai’s newborn twin, DiVyn, and her teenage brother, Jaydon. While it was challenging to be in so many places at once, she said the staff at Children’s did everything they could to make the experience easier.
“When we came to the Cardiac Intensive Care Unit (CICU), I’d never experienced anything like the level of care we received,” Mahnya said. “Kai got so much individual attention from the staff, and the nurses took time to sit down and talk with me. The social workers and patient advocates checked in often to see if they could assist in any way, and even the doctors would not just come by for quick checks. They held Kai, spent time with us and answered my questions. That level of compassion speaks of people who aren’t just doing a job for the money, but who have it in their hearts to care for kids.”
Mahnya said she especially valued the nurses who ensured that she was able to participate in Kai’s care and be her mommy, even though she was living in the hospital for those first few months. She learned that she could trust them with Kai, rely on their expertise and take their advice when they encouraged her to go home and rest. When Mahnya wasn’t at the hospital, she received frequent updates and pictures of Kai, which eased her mind and made her smile. Mahnya also mentioned how fantastic her experience with Kai’s surgeon, Dr. Subhadra Shashidharan and Kai’s pediatric cardiologist, Dr. Matthew Ferguson have been.
According to her mom, Kai is a different child after her full heart repair in 2021.
“When she first came home, she was quiet, and she just looked around, taking it all in,” Mahnya said. “Her personality has multiplied since the repair. Now she runs the house, jumping and flipping and talking back! She relishes being a ‘one minute older’ big sister to DiVyn, and she looks out for her. She has so much energy, I can’t keep her still!”
Kai, now 2, knows her alphabet and colors, her age and everyone’s names. She enjoys dancing with her brother and sister, and her favorite movies are The Princess and the Frog and Moana. Her stuffer animals and baby dolls are her favorite toys.
“I’m just amazed at her progress and who she is today,” Mahnya said. “She still has some minor cardiac problems that her cardiologist, Dr. Ferguson, is closely monitoring, and she will have to have procedures in the future to replace her valve. But because of the amazing care of the cardiac team, I have no worries and know that she will live a long, happy life.”
For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.