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Kaii’s Journey With Congenital Heart Disease

“As a first-time mom, it was devastating for me to hear that we were going to have a child with a heart defect. I didn’t know what this journey was going to entail.”

— Ebonee, Mother

A Marathon, Not a Sprint: Kaii’s Journey With Congenital Heart Disease

Twenty-eight weeks into her pregnancy, Kaii’s mother, Ebonee Tavares, learned that her child would be born with a serious congenital heart defect (CHD) called double-outlet right ventricle with a large hole in the heart and a small body artery.

“As a first-time mom, it was devastating for me to hear that we were going to have a child with a heart defect,” said Ebonee. “I didn’t know what this journey was going to entail.”

Shortly after receiving Kaii’s diagnosis, Ebonee enrolled in HEARTPrep, a support program being piloted through a research study at Nemours Children’s Hospital, Delaware. HEARTPrep is delivered through the Nemours app and aims to help expectant parents emotionally prepare and cope when they learn their baby will be born with CHD.

“Parents, like Ebonee, who enroll in the HEARTPrep study, have access to tips and tools that may facilitate understanding and coping. These include video meetings with a psychologist to discuss how they and other family members are dealing with the situation,” said Erica Sood, PhD, Pediatric Psychologist in the Cardiac Center at Nemours Children’s Hospital, Delaware, and Director of the Cardiac Learning and Early Development (LEAD) Program.

Ebonee participated in HEARTPrep until she gave birth to Kaii via C-section at 34 weeks.

Following his birth, Kaii was immediately airlifted to Nemours Children’s Hospital, Delaware, where the entire family was supported by a network of experts. This included a team of clinical psychologists and social workers who helped Ebonee seek support for her post-partum depression and manage the emotional toll of Kaii’s diagnosis.

Soon after arriving at the hospital, Kaii required open heart surgery. This was the first of three open heart surgeries and one cardiac catheterization that Kaii had during his first nine months of life.

After Kaii’s first surgery and weighing just four pounds, his aorta ruptured. Christian Pizarro, MD, Chair of Cardiac Services at Nemours Children’s Hospital, Delaware, who performed each of the open-heart surgeries, also repaired Kaii’s aorta.

“I am grateful for Dr. Pizarro’s expertise,” said Ebonee. “… I am so thankful that he saved my son’s life.”

Kaii now has a clean bill of health and is meeting his developmental milestones.

“This journey is not a sprint; it’s a marathon,” said Ebonee. “To see him where he is today is truly a miracle. I am grateful to be his mother.”