Meet Kai: A Nicklaus Children’s Hospital Champion

Meet Kai: A Nicklaus Children’s Hospital Champion

During Family Advocacy Day, Kai and his family will discuss his health journey, Nicklaus Children’s Hospital’s role in providing him with necessary care, and why we must invest in the future of patients like Kai.

During in utero testing, clinicians diagnosed Kai with congenital heart disease, specifically an Atrial Septal Defect (ASD), Ventricular Septal Defect (VSD), as well as a Hypoplastic Aortic Arch.

Kai, a Nicklaus Children’s Hospital champion, is
participating in Family Advocacy Day 2023.

“Kai’s older brother and I both have congenital heart disease and we found out Kai’s condition was more severe,” says Jackie, Kai’s mother. “Without prenatal testing and an urgent transfer to Nicklaus Children’s Hospital upon birth, he would have gone into heart failure.” Nicklaus Children’s helped the family prepare properly for birth and then cardiac repair for baby Kai.

Jackie and Kai’s older brother, Beau, are both patients of Nicklaus Children’s. Jackie had an open-heart surgical repair for an ASD at age 13 at Nicklaus Children’s Hospital. Beau had his prenatal care and is currently being followed for his ASD, which will eventually require repair when he is four or five.

“When we found out we were pregnant with Kai, we knew there was a chance he would have the hereditary heart disease,” says Jackie. “We immediately contacted Nicklaus Children’s Hospital to schedule a prenatal ECHO.”

“Once Kai was transferred to Nicklaus Children’s Hospital, he started medications to compensate for heart failure. They could not transition him to oral medications, meaning he could not go home. His heart failure worsened at two weeks old and he had to have surgical repair of the ASD and the VSD,” says Jackie.

After Kai went home, he developed a common post-operative complication known as torticollis, or a type of muscle spasm. These complications are common in both children and adults. “Because Kai was an infant, insurance would not cover physical therapy as treatment, meaning we had to pay out of pocket,” says Jackie.

As a result of delayed treatment, Kai developed plagiocephaly, or a misshapen head, from only being able to lay down in the same position.

Currently, Kai is thriving. He has already caught up to his milestones and is currently rolling over. He will live a healthy life.

Family Advocacy Day

Elevating patient stories and educating lawmakers remains critical to increase awareness about the essential care provided by children's hospitals.