A little girl with a lot of heart beats the odds

left to right: Jennifer Co-Vu, M.D., Kennedy Spada, Connie Nixon, R.N., clinical coordinator at UF Health Congenital Heart Center

At her 18-week prenatal checkup, expectant mother Erica Spada received some troubling news. Her daughter, Kennedy, was diagnosed with hypoplastic right heart syndrome, also known as tricuspid atresia. This complex congenital heart condition meant that the right side of Kennedy’s heart was not developing properly, affecting normal blood flow through her heart.

Thankful to have received the diagnosis at such an early stage, the Spada family immediately began looking for the best care available. After two devastating diagnoses, the family came to UF Health for a third opinion. Spada shared her immediate relief at meeting Jennifer Co-Vu, M.D., director of the Fetal Cardiac Program at UF Health Congenital Heart Center (CHC).

“As soon as we arrived, it was clear we had found our home for Kennedy’s health care needs,” Spada shared. “Everyone in the CHC made our family feel comfortable from the first moment. Dr. Co-Vu went above and beyond to explain Kennedy’s diagnosis, treatment plan, and what we could expect as Kennedy grew up.”

Knowing Kennedy would require open-heart surgery soon after birth, Co-Vu connected the Spadas with Mark Bleiweis, M.D., director of the UF Health Congenital Heart Center, and the man who the Spadas refer to as their ‘real-life superhero.’

Kennedy was born May 24, 2017, and was initially scheduled for surgery within the first week. However, Kennedy’s initial progress and the family’s use of UF Health’s single ventricle monitoring program, an at-home monitoring system, meant that she was able to forgo the initial surgery. The program utilizes an iPad tablet provided by the CHC care team, which allowed the Spadas to share real-time updates on everything from Kennedy’s intake and output to her oxygen saturation levels and heart rate. Given the two-hour drive from the family’s home to UF Health Shands Children’s Hospital, the monitoring system made Kennedy’s care at home much more manageable.

At four months, Kennedy underwent her first open-heart surgery. She received PA banding and the Glenn procedure, whereby the surgeon disconnects the superior vena cava from the heart and connects it to the pulmonary artery, allowing blood from the upper part of the body to flow directly into the pulmonary artery. Performed by Bleiweis, the procedure was successful in helping correct her blood flow.

The Spada family with Dr. Mark Bleiweis

Bleiweis continued to monitor Kennedy post-surgery. His regular communication and care were especially meaningful to the family at a time of uncertainty about Kennedy’s health.

“Dr. Bleiweis has gone above and beyond to take care of our warrior girl. Not only in surgery, but through recovery and even now, in day-to-day life,” Spada said.

“He walked us through the entire procedure before the day of surgery answered all our questions. He made sure his surgical team gave us frequent updates and he came to see us as soon as he finished. He even rocked the “Kennedy Krew” T-shirt we made him! In the most stressful moments of our lives, we were constantly at ease knowing she was in the best hands!”

Thanks to the expert care at the congenital heart center and the close at-home monitoring, care providers and the Spada family decided to expedite Kennedy’s next and most important surgery – the Fontan procedure – which would fully correct her tricuspid atresia. The surgery was a success, and Kennedy recovered well, being released home one week post-surgery.

As a grateful mother, Erica Spada only has praise for Drs. Co-Vu, Bleiweis and the team at the congenital heart center Spada calls Bleiweis a ‘miracle worker,’ and couldn’t be happier with the careful precision and care taken during Kennedy’s surgery, even describing her surgical scar as beautiful. Moved to give back to those who’d given so much to them, Kennedy’s family created the Kennedy’s Krew Heart Fund, which provides support for patient care, education and program needs in pediatric cardiology, specifically the single ventricle monitoring program.

“We are forever grateful for the UF Health Congenital Heart Center and are blessed to be able to give back to the program that has gifted us with our daughter’s life,” Spada said. “We give both monetarily and by sharing Kennedy’s story to raise awareness and inspire others to give to this amazing program that provides hope to those who need it most – our single ventricle heart warriors!”

Kennedy Spada beat the odds at birth and continues to beat them daily. As she continues to progress, thriving at school and fearlessly running circles around her peers, Kennedy’s mother declares that her daughter is proof that miracles do happen.

“Kennedy was born with a fire in her that will get her through anything life throws her way!” Spada exclaimed. “Her journey has strengthened our family’s faith and has turned non-believers into believers. This girl was born to move mountains!”

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Kennedy's krew heart fund

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